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DEVELOPMENTAL DISABILITIES Specialty Training

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					DEVELOPMENTAL DISABILITIES
     Specialty Training
       THE STUDENT MANUAL
             May 2006
                DD SPECIALTY TRAINING

   Creating this manual could not have happened without the input, vision,
 assistance and hard work of many individuals. We wish to thank everyone
                  who has touched this project in any way!

                                     Thanks!



This manual incorporates much of the information contained in six chapters
found in the, “The Integrity of Community Living” published by the Washington
State Department of Social and Health Services, Division of Developmental
Disabilities in 1992. Even though this final product looks quite different that
initial material was invaluable. Our thanks go to the editors, Joyce Duran and
Jerry Marsh, as well as the contributors, Andy Byrne, Lyle Romer, Tom O’Brien,
Carolyn Carlson and Sue Elliot.

Using that initial nucleus of information as a starting point, many individuals
worked on writing, editing, consulting, providing content information, and/or
assisting to print and disseminate. They include: Jean Ware, Angela Rapp
Kennedy, Fran Elliot, Teri Johnson, Cheryl Strange, Janet Adams, Lyle Romer,
Gene McConnachie, Colleen Erskine, and Sue Cabe.

The manual revision of January 2006 includes contributions from Fran Elliot,
Janet Adams, Cheryl Strange, Joe Hutchings, Donna Dykstra, Chuck Goodwin,
Chris Coleman, Peggy Bureta, Teri Johnson and Linda Gil.



Additionally we want to extend a heart felt thanks to everyone who took
the time to review initial drafts and provide feedback on this 2006 revision.




                                        2
  DD SPECIALTY TRAINING

         TABLE OF CONTENTS


Introduction                                    Page 4



Overview of Developmental Disabilities          Page 6

Values of Service Delivery                      Page 28



Effective Communication                         Page 50



Introduction to Interactive Planning            Page 64


Understanding Behavior                          Page 75



Crisis Prevention and Intervention              Page 99


Overview of Legal Issues and Individuals’ Rights Page 112


Resource Section                                Page 126




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                 DD SPECIALTY TRAINING



                                INTRODUCTION

You have chosen a career in services to people. Wherever you work, supporting
individuals with developmental disabilities requires an understanding of the
service system. Wherever you work, it is important that you understand the
individual(s) with whom you work. In the field of Developmental Disabilities it is
called “support” when you work directly with a person who has a disability. Your
attitude and skills make a difference!

This student manual is part of an 18-hour introductory training course on
supporting individuals with developmental disabilities. The course includes
opportunities to learn with other people so you increase your understanding of
the information and concepts presented in this manual. The information
provided includes:

      A history of developmental disabilities
      Definitions and terms
      Concepts, rules, regulations and
      Values that will increase your ability to work with individuals with
       disabilities and to provide
      Quality services and supports.

Each section of the manual provides a brief introduction to a specific topic. You
can find references in the Resource Section that will help you locate more
detailed information. Your supervisor and experienced co-workers are also
great resources.

The course includes a competency test to demonstrate your understanding of
the material. A competency is a skill you learn and apply to your work. When
you finish this course, you will have many new skills, or competencies, that will
help you to support a person with a developmental disability. Once you have
shown that you have the new competencies (after you successfully complete the



                                         4
test) you will receive a certificate of completion for your records. Your
employer will want a copy of the certificate as well.

The material in this manual and the training course will be reviewed and revised
as necessary. Please use the form at the back of the manual to provide
suggestions for improvement. You will find the mailing address on the form.




Relax and learn!




                                        5
            OVERVIEW
AN OVERVIEW OF DEVELOPMENTAL DISABILITIES

   http://www1.dshs.wa.gov/ddd/index.shtml
          The Internet home page of the
   Division of Developmental Disabilities (DDD)
                  OVERVIEW


                          OVERVIEW COMPETENCIES
                      After completing this chapter you should be able to:




        Define developmental disability and why it is a requirement for specialty
training in adult family homes and boarding homes.




        Describe the following conditions that are classified as developmental
disabilities: Mental Retardation, Cerebral Palsy, Epilepsy, and Autism.




       Identify the negative effects of using labels such as “retarded” or
“handicapped” to represent people and positive alternatives.




       Describe how attitudes toward people with developmental disabilities
have influenced services for those individuals over the past 30 years.




           Describe the distinction between developmental disabilities and mental
illness.




                                               7
              OVERVIEW




                     Labeling People Can Be Harmful

Many terms are used to describe people with cognitive disabilities. Examples of
these are developmental disabilities and mental retardation. Terms like these
can be useful. People who share something in common are grouped together, and
this makes it easier to communicate about them. But these terms are also labels
and labeling a person can be harmful. Focusing on labels makes us forget about
the person.

           Labels make us think everyone with the label is alike.
          When a person is called mentally retarded, this conjures
          up for many people, a certain image. An individual with
          mental retardation is a person with unique dreams, goals,
                       and needs, just as we all are.

Over the years various labels have been used to classify people with mental
retardation. People with mental retardation have been called:

      feeble-minded
      idiot
      imbecile
      totally dependent
      Custodial

These terms have taken on very negative meanings and images. Like most
negative labels, they demean people, unfairly stereotype them, and stress
differences rather than abilities. These words hurt people. Even neutral words
can eventually become words that convey poor images of a person.

People First http://www.disabilityisnatural.com/peoplefirstlanguage.htm is a
concept and a self advocacy organization. People with disabilities urge you to
remember when you talk about people you should talk about people first and
labels later. Rather than saying the blind woman or the retarded man, you

                                        8
              OVERVIEW


should say the woman who is visually impaired or the man with developmental
disabilities. The People First organization is one of several in an international
movement working to support individuals with disabilities to become empowered,
vocal partners in the service system and in their communities around the world.

When one places a label on a person it can make us forget that each person is an
individual. Each person has unique strengths and needs. When we label a person
who has a disability, the label hides what the person can do, or their unique
capabilities. A person with a developmental disability could have significant
physical limitations and be very intelligent but the label makes us think only of
the person’s disability. Labels make us predict that people will act in certain
ways. People tend to act the way they are treated. The more we assume a
person can’t do something, the more likely the person will have trouble doing it.

When we have lesser expectations for people with disabilities, we reduce their
opportunities for positive experiences. Sometimes we might think someone
cannot change even with learning opportunities. This is not true. All people can
do better or worse according to their environment, their attitude, their health,
and expectations.

In recent years, our society has recognized how much environment affects the
abilities of all people. A great deal of legislation has been passed to ensure that
the environments in which people with disabilities live and work are in their best
interest and that planning for services is individual to the person.

In spite of recent changes, labels and are still commonly used. People with
disabilities are still kept apart (segregated) from community activities and may
not be invited nor provided community supports in many places in our country. It
is sometimes easier to see what a person cannot do, rather than what he/she IS
ABLE to do. It then becomes simple to keep people away from others rather
than find opportunities that meet people’s needs and desires. It is important to
make sure you don't use or create negative experiences with the people you
serve.




                                         9
              OVERVIEW


            "People with developmental disabilities are, first and
         foremost, people with abilities. Without assistance, some
          people cannot take advantage of the opportunities of our
           society. Each person is, however, more like you than
                                different."
                 (Minnesota Developmental Disabilities Council, 1988)




                           Developmental Changes

People change as they grow. Physical growth means changes in the body, such as
growing taller or gaining weight. Mental growth means changes in thinking and
language such as: learning to talk, telling the difference between large and small
objects, and telling time. These physical and mental changes work together so
individuals can do more and more complex tasks.

Babies crawl, eat with their hands, and are able to use the toilet. Children walk
and run, eat with utensils, and use the toilet. At generally predictable times,
people begin to demonstrate particular skills. These are examples of behavioral
milestones, or changes in the way we act that people in all cultures reach,
regardless of their cultural or ethnic background.

Most individuals show similar kinds of physical, mental, and behavioral changes,
as they grow older. These changes are called “development”. Each person
develops at his/her own speed, but most people develop at similar rates. For
example, most babies in almost every culture:

      Vocalize their first words between 10 and 14 months.
      Most children begin to walk by the time they are 12 to 18 months old.
      These are examples of “developmental milestones”.

A child who does not pass through the milestones at the expected age may have
a “developmental disability”. Individuals with developmental disabilities often
develop at a slower rate. As children grow older the gap may widen between the


                                          10
              OVERVIEW


person with a developmental disability and their friends of the same age (peers).
This does not mean however, that the individual is not still growing, changing and
learning.

Functioning, or the ability to successfully manage one’s self in the environment,
is a key element in defining a developmental disability. The definition of
developmental disabilities focuses on how a disability interferes with a
person’s abilities and capacity to perform in seven basic functional areas.


                       Seven Basic Areas of Functioning



         Self-care: things people do daily to meet their basic life needs. This
includes eating, personal hygiene and grooming.

DDD Core Values http://www1.dshs.wa.gov/ddd/index.shtml




        Mobility: to move from one place to another with or without mechanical
aids.

DDD Core Values http://www1.dshs.wa.gov/ddd/index.shtml




        Receptive and expressive language: the verbal and nonverbal skills a
person uses to understand others and to express his/her ideas and feelings.

DDD Core Values http://www1.dshs.wa.gov/ddd/index.shtml




                                        11
               OVERVIEW




         Learning: ability to acquire new behaviors, new knowledge, perceptions
and information; ability to apply past experiences to new situations.

DDD Core Values http://www1.dshs.wa.gov/ddd/index.shtml




         Self-direction: the ability to take care of oneself. To make sound
personal decisions and protect self-interest.

Residential Service Guidelines and County Guidelines at this Internet site




         Capacity for independent living: ability to live without extraordinary
support in a way that is age appropriate.

Residential Service Guidelines and County Guidelines at this Internet site




         Economic self-sufficiency: capacity to maintain adequate employment
and financial support.

Residential Service Guidelines and County Guidelines at this Internet site

Definitions in this section:

Physical growth: changes in the body
Mental growth: changes in thinking and language
Developmental milestones: skills that every typically developing child, in any
culture, acquires at predictable times


                                         12
               OVERVIEW


Peers: friends and relatives of the same age
Developmental disability: Under RCW 71A.10.020(3) the definition in law of a
developmental disability is defined as:


   A disability attributable to:
      Mental Retardation;
      Cerebral Palsy;
      Epilepsy;
      Autism; or
      Another neurological or other condition closely related to mental
       retardation or that requires treatment similar to that required for
       individuals with mental retardation.
      http://www1.dshs.wa.gov/ddd/eligible.shtml for DDD eligibility and
       services




                  Examples of Developmental Disabilities

The causes and kinds of developmental disabilities are varied. Since you will
work with many different people, a few examples of developmental disabilities
are described below. As you review these terms, remember that a label cannot
describe a person's skills or capabilities. In a person’s record, you may find
reports from a physical or occupational therapist or a physician who describe in
detail the specific disability, but not the person’s abilities in other areas. While
reports will provide you with important information, knowing the person, his or
her family, and his or her personal history, will be the greatest source to guide
you in providing assistance. It is important to understand the person's goals,
hopes, experiences, and capabilities, as well as his or her particular type of
disability.




                                          13
               OVERVIEW




         Mental Retardation

People with mental retardation are individuals who have difficulty learning
general knowledge as well as adaptive behavior. Adaptive behavior is the way a
person adjusts to the environment. When a person has difficulty with adaptive
behavior, he/she will also have difficulty meeting expectations for personal
independence at his/her age level.

There are a number of different definitions of mental retardation. According
to the Washington State definition, a score of two standard deviations below
the mean on the Stanford-Binet, Wechsler, or Leiter International Performance
Scale indicates a label of mental retardation. That translates into actual scores
on those tests that range from 67 to 69. A person must also have significant
difficulty functioning in various ways and that difficulty must be present before
adulthood.

There are over 200 known causes of mental retardation, and these only account
for a quarter of its occurrence. These include genetic disorders such as Down
syndrome; infections such as rubella; intoxications during pregnancy; poor
environmental factors in early life; and/or brain damage. One way of classifying
these causes is to group them by genetic problems, pregnancy difficulties, birth
difficulties, or problems with the environment after birth. Another way to
classify is by medical groupings or causes, including infection, injury, metabolism,
and brain disease.

There are a number of terms, which are used to label individuals with mental
retardation for purposes of information, funding services, and classification of
needs. Again, these labels, while they serve a purpose, can also be harmful. For
example, in order to classify levels of functioning you will see terms: borderline,
moderate, severe, and profound. Like any label, these words take on negative
stereotypes and self-fulfilling prophecies. While it is necessary to understand
the usage of these terms by policy-makers, researchers, and others, it is not in



                                         14
               OVERVIEW


the interests of the individual to use them in referring to him or her, and it is
not helpful to plan supports and services based on labels.

We know that learning a skill is not a prerequisite for participating in community
life. We therefore need to insure that support to participate is provided when
an individual has not yet achieved competence in a particular area. Although
people with mental retardation typically experience challenges in learning more
complex tasks, it is a mistake to limit anyone’s potential. Like everyone,
individuals with retardation are capable of mastering functional skills necessary
to live, work, and recreate in their communities when given the right support.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/eligConditions.shtml DDD eligible conditions
http://www1.dshs.wa.gov/ddd/requiredDocumentation.shtml DDD documentation
(www.nads.org) National Association for Down syndrome




         Cerebral Palsy


Cerebral Palsy is a general term. People with cerebral palsy may have difficulty
controlling their body motions. They may make weak or uncoordinated
movements. This is caused by damage to certain areas of the brain. Damage to
different parts of the brain will cause different forms of cerebral palsy.

Persons with cerebral palsy have very different kinds of abilities and
disabilities. Like all of us, each is a unique individual. Many people with cerebral
palsy have normal or above average intelligence, although sometimes an individual
can have other disabilities like blindness, deafness, epilepsy or mental
retardation.

People with cerebral palsy may have limited control over their muscles and limbs
in some of the following ways:




                                         15
              OVERVIEW


Spasticity: excessive muscle tightening causing heightened resistance to
movement.
Rigidity: stiffness of the body or limbs.
Tremor: shaky movement, when a coordinated movement, like reaching or
walking, is attempted.
Athetosis: slow, uncontrolled movements.

Most people with cerebral palsy experience a mixture of these movements,
affecting one or more parts of their body.

Resources on the Internet
http://www.aacpdm.org/index?service=page/Home) Academy for Cerebral Palsy
and Developmental Medicine
www.twinenterprises.com/cp) Cerebral Palsy Resource Center
(www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm) NINDS
Cerebral Palsy Information Page




         Autism


Historically autism was relatively rare, while it is now the fastest growing
disability category in schools. Autism occurs more often in males than females.
Researchers are uncertain of the cause of autism, but believe there is a physical
basis. People with autism have difficulty relating to other people. They avoid or
may not pay attention to others. Many individuals with autism have severely
impaired language ability.

When a person with autism learns language skills, she/he may not use this
language to talk to people in usual ways. For example, an individual sometimes
repeats exactly what other people say. This is called echolalia. Other people
with autism may learn how to talk to others in more effective ways. Still, since
communicating is difficult, it is very important to learn how to understand what
each individual person’s behavioral patterns may communicate.



                                       16
              OVERVIEW


It is common for individuals with autism to become upset with small changes in a
room or a routine. Many individuals may spend hours each day rocking back and
forth, singing to themselves, moving their hands in front of their eyes or
rubbing their own bodies. This self- stimulatory behavior can interfere with
learning more useful and productive ways of behaving.

While most people with autism have some degree of mental retardation, not all
do. A few people have unusual and exceptional skills in music, art, movement,
memory, and math. Knowing the individual well will help you to better facilitate
his/her growth by providing more effective support and training.

Resources on the Internet:
http://www1.dshs.wa.gov/ddd/autism.shtml Autism Awareness
(www.autism-society.org) Autism Society of America
http://www.autismsocietyofwa.org/ Autism Society of Washington
(www.feat.org) Families for Early Autism Treatment
(www.depts.washington.edu/uwautism) Autism Center University of Washington




        Epilepsy

People with a diagnosis of epilepsy have a tendency to have recurring seizures,
usually resulting from a disorder of the central nervous system. A seizure is
often described as an abrupt electrical storm or eruption that occurs in the
brain. This eruption results in the brain not working as it typically does for a
brief period of time. The outward signs will depend on where in the brain the
seizure activity is occurring. People often use the term seizure disorder
interchangeably with epilepsy. The most common types of seizures fall into two
main categories, partial and generalized. Partial refers to the activity occurring
in a specific place in the brain. Generalized refers to the activity affecting the
entire brain.

While it is often difficult to determine the cause of epilepsy, treatment with
medications may control or lessen the seizure activity. For those people for

                                        17
              OVERVIEW


whom medication is effective, having epilepsy may have little effect on their
daily functions and not constitute a disability.

Epilepsy occurs in one percent of the general population. People with epilepsy
have the same range of intelligence as others. Males and females are affected
equally. People with epilepsy have different abilities and disabilities just like
the rest of the population. It is important to recognize that some people with
epilepsy will require close monitoring and assistance with seizure control while
others may not. The important factor will always be to get to know the person
and to respond to their specific needs.

Resources on the Internet
(www.epilepsy.com) Epilepsy and Seizure Information
(www.efa.org) Epilepsy Foundation
(www.ninds.nih.gov/health_and_medical/disorders/epilepsy.htm) NINDS
Epilepsy Information Page
http://www1.dshs.wa.gov/ddd/links.shtml#E Developmental Disabilities
Resource Page




         Other Conditions

People may have other neurological conditions or conditions closely related to
mental retardation that could also qualify as a developmental disability.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/requiredDocumentation.shtml Required DDD
documentation for conditions




                                        18
              OVERVIEW




          Mental Illness

Although the two are very different, mental retardation is sometimes confused
with mental illness. Mental retardation is not a disease to be treated or cured
and does not result from a life trauma experience or stress. Unlike mental
retardation, mental illness can occur at any age and involve psychological,
behavioral, or emotional disturbances. Even though the two conditions are
distinct, people who have developmental disabilities are as susceptible as anyone
else to develop mental illness. They should have the same access to community
mental health centers for diagnosis, medication, counseling, and crisis support as
we all do.

Resources on the Internet
http://www1.dshs.wa.gov/mentalhealth/ Washington State Mental Health
Division




          Substance Abuse

People with developmental disabilities, like everyone, have access to alcohol,
prescription drugs and a wide array of illegal drugs and harmful substances. A
small proportion of people with and with out disabilities do abuse and/or become
dependent on these substances. Research has shown that the incidence of
alcohol abuse and dependence in adults with developmental disabilities is very
similar to the incidence in the general population. People with developmental
disabilities generally are exposed to many of the known risk factors for
developing substance abuse problems, are rarely provided with preventive
education and are not generally able to find appropriate treatment for their
substance abuse problems.




                                        19
               OVERVIEW


If you are concerned about someone’s alcohol use, or use of legal or illegal drugs
or other substances, you should seek skilled help in assessing the severity of the
problem and the need for treatment interventions.

Resources on the web:
http://www1.dshs.wa.gov/dasa/ Division of Alcohol and Substance Abuse




                                   Eligibility

A determination of eligibility is a determination that a person meets the
definition of a developmental disability as defined in Washington State law. An
individual must meet the eligibility definition to become a DDD client.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/eligible.shtml DDD Intake and Eligibility
Requirements

Eligibility requirements may change, but currently services through the
Washington State Division of Developmental Disabilities may be provided to any
individual meets the following definition:

            What is a developmental disability as defined by law?

Under RCW 71A.10.020(3) the definition in law of a developmental disability is:


A disability attributable to:
      Mental Retardation;
      Cerebral Palsy;
      Epilepsy;
      Autism; or




                                        20
                OVERVIEW


      Another neurological or other condition closely related to mental
       retardation or that requires treatment similar to that required for
       individuals with mental retardation.

Which:
      Originated before the individual attained age eighteen;
      Continued or can be expected to continue indefinitely, and Results in
       substantial limitations to an individual's intellectual and/or adaptive
       functioning.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/eligible.shtml DDD eligibility
http://www1.dshs.wa.gov/ddd/requiredDocumentation.shtml DDD documentation

Developmental disability for adult family home or boarding homes is defined as:
A person with a severe, chronic disability because of cerebral palsy or epilepsy,
or any other condition, other than mental illness. The disability must be found
to be closely related to mental retardation which results in impairment There
must be general intellectual functioning or adaptive behavior similar to that of a
person with mental retardation, and requires treatment similar to those
required for these persons (i.e. autism); and

   1. The condition was manifested before the person reached age twenty-two;
      and
   2. The condition is likely to continue indefinitely; and
   3. The condition results in substantial functional limitations in three or more
      of the following areas of major life activities:

          a.   Self-care;
          b.   Understanding and use of language;
          c.   Learning;
          d.   Mobility;
          e.   Self-direction; and
          f.   Capacity for independent living.



                                         21
              OVERVIEW




                        A Brief History of Services

Throughout history, people with disabilities have been treated in inhumane ways.
Older civilizations often left children with disabilities to die by exposure to the
weather. Some kept them as "fools" for amusement. In the middle ages, people
who were poor, elderly, or disabled were placed in local jails. When society
began to build asylums, one perceived advantage was that it was cheaper to feed
and house these individuals this way, than to jail them or let them wander and
depend on local charity. In the 1800s, pioneers such as Itard, Sequin, and
others began to demonstrate effective training techniques and founded
residential training schools. In this country, Dr. Samuel Howe opened one of the
first institutions for persons with mental retardation in 1848 in Boston. By
1900, over 14,000 persons were living in institutions. By 1960, 160,000 persons
were in 108 public residential institutions.

One original goal of institutions was to change people with mental retardation
into individuals of normal intelligence. As time passed, the philosophy shifted
from education to long-term care and protection. After a while, it became
obvious that the goal was not to protect people with disabilities from society,
but rather to protect society from people with disabilities.

By the 1960s there were efforts to develop alternative services in local
communities. By the 1970s, normalization (discussed in detail in the “Values
chapter”) and de-institutionalization were becoming national priorities. Court
decisions, legislation, family and self-advocacy and changes in funding and policy
have all contributed to increasing normalized and life enhancing services. Yet in
many places, there is still controversy over the future system of service for
supporting people with disabilities.

Resources on the Internet:
http://www.mncdd.org/parallels/menu.html Parallels in Time: A History of
Developmental Disabilities



                                        22
              OVERVIEW




                             Services in Washington


The State of Washington has historically received national attention for its
leadership in the development of dignified and progressive services for
individuals with developmental disabilities. A variety of employment options and
residential services have occurred primarily through the efforts and
expectations of families, a strong partnership between private and public
agencies and a service delivery system designed to promote local planning and
control through county boards. Prior to the development of community based
alternative services, the primary option available to families was a choice of six
state-operated institutions located throughout Washington State. During the
1960’s families strongly questioned the lack of options and the expectation that
their sons and daughters leave family and friends when, with supports, they
could continue to be a part of their community.

Between 1967-1969, two decisions provided the opportunity for which many
families had been waiting, the option for community living. The first decision
was to increase state funding for services to people with developmental
disabilities, and the second decision was to not increase the number of beds in
the State's institutions.

Between 1969-1972, Washington's first 25 group homes (serving 336 people)
were established in various communities throughout the State. Most of these
homes served 15-20 people and were seen as reasonable alternatives to
institutionalization. In 1974, again as a result of lobbying efforts by parent and
advocacy organizations, the Office of Developmental Disabilities was
established. For the first time in Washington's history, families had a single
point of entry into the DDD service delivery system to obtain residential
services as well as other supports. The state was divided into six regions, field
services offices were established in many communities and a case management
system was designed to assist families in planning for the needs of their sons
and daughters and to connect them with the appropriate supports. From 1976


                                        23
              OVERVIEW


to 1982 major changes occurred including an expansion of the group home
program; respite care for families; the continued development of residential
supports which would enable people, regardless of their degree of disability, to
live in their own home or apartment; and work opportunities for people with
disabilities in regular businesses with support from employment agencies. For
the first time, more people were receiving support in the community than in
institutions.

After 1982, dramatic advancements in technology, and more importantly in
thinking, resulted in a service system, which is now able to provide a wide variety
of supports for individuals with developmental disabilities. The concept of
“normalization” influenced the move toward today’s philosophy of what
individuals can do and away from what they can not do. Less time, energy and
money were spent on trying to "fix" people and more time, energy and resources
were put into supporting people.

Advocates began pressing for more individualized, community-centered supports
for people who previously were sent away when families were unable to continue
to provide the care needed. Washington State developed service guidelines and
principles for employment that advocated a transition from sheltered work to
more integrated work opportunities in regular businesses with increased
earnings, benefits and friendships with co-workers. Community residential care
improved and enabled families to bring their children home from institutions.
Respite care helped families to maintain children in their homes with added in-
home service supports. In addition there has been a tremendous increase in the
variety of residential options available to people with disabilities ranging from a
few hours of support to 24 hour nursing care.

Resources on the Internet
http://www.americanhistory.si.edu/disabilityrights/welcome.html Disability
Rights Movement
http://www1.dshs.wa.gov/ddd/services.shtml Services in Washington State

Assuring the quality of these programs and determining what is important for
people to do on behalf of others led to the creation of a statewide task force in

                                        24
              OVERVIEW


1984. The task force developed a set of principles as a guide for developing,
implementing, and monitoring residential services in Washington State. These
guidelines have become the basis for service delivery throughout the state.
They look at the benefit of services to individuals with developmental
disabilities. These benefits include:

    Health and Safety,
    Personal Power and Choice,
    Personal Value and Positive Recognition by Self and Others (Status),
    A Range of Experiences Which Help People Participate in the Physical and
     Social Life of Their Communities (Integration),
    Good Relationships with Friends and Relatives, and
    Competence to Manage Daily Activities and Pursue Personal Goals.

Washington State has made steady progress over the past thirty years in
providing services to persons with developmental disabilities. Prior to 1969 no
state support was being provided to anyone living in the community, while in
2000 between fifteen and twenty thousand people were receiving at least one
community-based service. The movement to community-based services has
resulted in a reduction in the size of the institutional system from a 4,212
maximum capacity in 1968 to less than 1,200 in 2001.

There are a wide variety of services offered to persons eligible for services
through the Division of Developmental Disabilities. Depending upon need, and
the availability of resources, a person may receive family support; employment
services; residential services—such as group home, adult family home, supported
living, foster care; in-home support through Medicaid Personal Care; and/or
community access.

In the coming years, Washington State plans to continue developing more
community living arrangements for more people, and to create more work
opportunities within communities. The state is moving toward a self-directed
service system, where people with disabilities and their families will have more
power and choice over the services they receive. Parents, people with
disabilities, community members, service providers, state and local officials and

                                        25
                   OVERVIEW


advocates in Washington State continue to work together so people with
developmental disabilities will be included with people without developmental
disabilities and all will share an improved quality of life.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/services.shtml Services in Washington State




                                             Conclusion

An understanding of terms used and examples of types of developmental
disabilities is helpful when you provide support to people with developmental
disabilities. It is always most important, however, to focus on the person and
what the person wants, needs and can accomplish.

Washington State does this by embracing the Residential Services Guidelines,
which stress the personal benefits of health and safety, power and choice,
status, integration, relationships and competence. Individuals whom you support
will have the most opportunities to achieve the quality of life they desire if you
keep these in mind.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/services.shtml Supported Living Services


Parts of this chapter were taken from Enhancing the Lives of Adults with Disabilities. Dileo, Dale and
Nisbet, Tan; Foundation Training - Developmental Disabilities Services Division - State of Oklahoma and
the Trainer Manual - Minnesota Department of Human Services, Division for Person with Developmental
Disabilities 1995.




                                                    26
OVERVIEW


                        Notes
                Thoughts

                    Questions




           27
     VALUES
VALUES OF SERVICE DELIVERY
                VALUES


                          VALUES COMPETENCIES
                   After completing this chapter you should be able to:




         Identify the principles of Normalization and its significance to the
work of caregivers in adult family homes and boarding homes.




          Explain how understanding each individual’s needs lead to better
services and supports, which in turn lead to better outcomes for the person.




          Describe each of the residential service guidelines adopted by the
Division of Developmental Disabilities. Identify how the values represented in
the guidelines are important in the lives of people with developmental disabilities
and how they can be applied regardless of the setting.




         Describe the principle of self-determination.




           Identify positive outcomes for individuals with developmental
disabilities when they are connected to the community in which they live.




                                           29
                VALUES




                       Normalization and Social Roles

During the early 1960s, several American educators traveled to Scandinavia to
experience firsthand how people with disabilities lived there. These travelers
were impressed with what they saw. People with disabilities were living in
ordinary homes in the community, cooking meals, leaving for work or school, and
making their own choices about their lives. This was startling due to a long
philosophy and history of services that had kept people with disabilities apart
from their homes, families and communities in the United States. Yet here were
people living according to a philosophy the Scandinavians called "normalization."
This exposure to the reality that people with disabilities, when provided with
the right support and opportunities, could live as we do, began a social movement
in this country as well.

By 1972, Wolf Wolfensberger had become North America’s leader in
normalization, or as it is now called social role valorization (SRV). This concept
refers to both a philosophy and a policy in working with people who have
developmental disabilities. It states that people who have disabilities are
entitled to live as much as possible like everybody else in ways that enhance
their status. This means they have the right to live like others in the
community. Washington State Division of Developmental Disabilities has
incorporated this philosophy into guiding principles for the development and
implementation of services. However, required policies do not always translate
into reality. There are numerous obstacles to obtaining a valued life style.
Having a disability in our society means that many people will think of you as
different in a negative way. Our culture values being productive, skilled,
attractive, and affluent.

For a number of reasons, which have little to do with the people themselves,
these valued attributes are rarely connected to people who are disabled. Rather
people with disabilities are often wrongly perceived as people who act strangely,
are incompetent; or as being funny-looking; as children who never grow up; or
even as being dangerous or sickly.

                                        30
                VALUES



These perceptions are myths. Children with disabilities grow into adults with
needs of interdependence, privacy, accomplishment, sexuality, and responsibility.
People with disabilities can learn a diverse range of valued skills, and many have
demonstrated their on-the-job productivity and their ability to manage a home
given the right supports. Much of the reason some people with disability look
different is because they have never been taught grooming or styles, or the
programs in which they find themselves do not see appearance as important.

Yet the myths are powerful. There has been much controversy around the
country surrounding some very basic issues for people with disabilities. Some
neighborhoods have fought against people with disabilities living in their midst.
Many people are uncomfortable attending school with students with disabilities,
shopping in their communities alongside consumers with disabilities, or being
near co-workers with disabilities. The history of professional services has often
supported these myths. By isolating people, by grouping them together, by
labeling people, and by creating special segregated services, we have made
individuals appear even more different.

Services and attitudes are evolving in a positive way. Part of the reason is a
greater awareness of the principles of normalization. We are learning how to
better communicate with our communities. One of the most powerful ways to
communicate the contribution people with disabilities can bring to their
community is to have people participate successfully in their communities as
good neighbors, good workers, and good friends to those around them.

A big part of our job, then, is to understand how perceptions of people with
disabilities are developed, and to support more valued roles for the people with
whom we work in order to enhance their image.




                                        31
     VALUES


  "The normalization principle reminds us of two things.
   First, just because a person has a negatively valued
characteristic, does not mean we are justified in isolating
him or her from community life. Second, the services we
 offer should attempt to balance personal characteristics
   which are seen negatively with others which are seen
                        positively.

    A person labeled “severely retarded' who has major
mobility and speech problems (all characteristics which will
change very slowly) presents a positive image if she/he is
     fashionably dressed, lives in an apartment with a
  roommate and a personal attendant, and is productively
   employed wiring electronic circuit boards at a wage of
$6.00 per hour. The same person will be seen much less
 positively if she/he lives in a setting that is congregated
 and spends much of each day idle except for 30 minutes
                   of “recreation therapy“.

All of these characteristics--appearance, activities, living
place, occupation--can be substantially influenced by the
service system. The principle of normalization expects a
        service agency to increase people’s positive
                     characteristics."

      John O'Brien, "The Principle of Normalization"




                            32
                VALUES


Normalization does not emphasize how people with disabilities are different
from others. We are all different in certain ways but at the same time we are
all more alike as people with the same needs and rights.



        Normalization stresses what people can do, rather than what they
can’t do.



       Normalization places an emphasis on the environment and the
experiences encountered.



       Normalization assumes that all people can learn. Therefore,
experiences can be planned which foster growth and learning.

Probably the hardest factors to integrate into a philosophy of normalization are
the many special circumstances, which make each person and each situation
unique. This is where your judgment is so important. Often times, people use
their own standards of choice as a yardstick for what is appropriate. "If it's
good enough for me..." thinking reflects your values which may not apply to
others. It is important to always be seeking knowledge about the person you
support.

Benefits that Washington State believes are essential in supporting individuals
with developmental disabilities to live typical lives are:

               Competence
               Relationships
               Integration
               Status
               Power and Choice
               Health and Safety


                                       33
                VALUES




                                  Competence

Competence is the capacity to do what you need and want to do. There are
two ways to be competent. You may be self-reliant and able to do things for
yourself and/or you have the power and/or support to identify and obtain the
help you need from others.

Besides living in the community, individuals will benefit by learning skills that
help them to participate fully in their jobs and in their community. It is
important to model and teach behaviors that enable people to fit smoothly into
the community. The skills you teach should be physically adaptive and also
socially enhancing.

The more competencies and skills a person possesses, the more choices a person
will have in improving his/her image and status. Learning skills should occur in
the context of real situations. Adults with a disability have often spent their
whole lives "getting ready" for a job or "getting ready" for living in the
community. The best way to learn functional skills is in real jobs, homes, or
communities, and not in readiness programs.

Some people with developmental disabilities need assistance to do what they
need and want to do. Sometimes people will be able to learn the things they
need to know to be self-reliant. Sometimes they will need assistance to get the
help they need to get things done. Sometimes people will be able to direct their
learning or direct the support they need. Sometimes people will need assistance
to decide what to learn and how to direct their support system.

People who receive services should have opportunities to be as self-reliant as
possible and to determine the level, type, and provider of support that they
need. Effective programs ensure that lack of skills or lack of ability to direct
needed supports are not barriers to choice, positive status, integration and
relationships.


                                        34
                VALUES


To decide whether our services support the building of competence, we can ask
ourselves; are we:



       offering people functional, age-appropriate opportunities to learn
relevant skills they have indicated an interest in or a need to know?



        helping people define skills they would like to learn and assess the
feasibility of mastering the skills in a reasonable period of time?



       assisting people by doing activities in environments that are important to
the person and relevant to the activities?



        providing people with the opportunity to be self-reliant?



       providing direct assistance when a person needs it, including back-up help
when a person tries to be self- reliant and fails?



         providing opportunities for people to use the skills they have, including
skills of defining, negotiating and directing the help they need?



        structuring staff roles to fit the needs of the people served, including
being able to teach and give direct assistance to the person as well as to others
who may provide support, e.g. co-workers, volunteers, etc?



The benefit people will derive, if we answer yes to the above questions, is
COMPETENCE.


                                         35
                VALUES




                                 Relationships

Most people feel that the key to a quality life in the community rests on
relationships with others.

            "We need to belong intimately to a few people who are
            permanent elements in our lives. A life without people,
          without people who belong to us, people who will be there
            for us, people who need us and who we need in return,
           may be very rich in other things, but in human terms, it
          is no life at all; all the complicated structures we create,
           are built on sand. Only our relationships to other people
                                      endure."

                              Harold Kushner
                 When All You've Ever Wanted Isn't Enough

Your attitude will have a powerful long-term effect on public attitudes toward
people with disabilities. If our goal is to increase community participation of
people who may be seen as different, the message sent by what we do is as
important as what we accomplish.

Research has shown that the most significant factor for people who succeed on
the job is related to the social relationships they have formed. Our friends,
families, neighbors, co-workers, and acquaintances are important people in our
lives. Sometimes a staff person becomes a long-term friend to someone with
whom they work. In addition it is also important to support the development of
diverse relationships with the rich variety of people in a person's community.
We can help to facilitate this by providing introductions and opening up our own
networks of relationships. We can also help people develop shared experiences,
gain access to social organizations, and participate in community activities.


                                       36
                VALUES


Friends and family offer people essential support and protection. They lend
continuity and meaning throughout life, and open the way to new opportunities
and experiences. Many people with developmental disabilities rely on residential
services for assistance in maintaining relationships with family and friends. Help
may also be needed to meet new people and make new friends. An effective
residential service protects existing relationships and supports new ones. An
effective program creates opportunities to assist people to meet and make
friends with neighbors, co-workers, and other community members.

One way to determine how well we are supporting people to have rewarding
relationships is to ask ourselves; do we:



       identify the people who are important to each person with a disability
and provide the person with necessary assistance to maintain or re-establish
contact with them?



       recognize that family members are very important to most people and
work to negotiate any conflicts which arise between the program and family
members in a way that protects those relationships?



       structure staff roles in ways that use and promote their ability to build
bridges to friendship for people with disabilities?



        encourage people to reach out to other people they want to get to know?
Some people who have been socially isolated may need guidance and coaching to
assist them in making friends.




                                       37
                VALUES



      encourage people without disabilities to discover what they have in
common with people with developmental disabilities?



        welcome the friends a person chooses? Occasionally the person's choice
of a friend may conflict with the person's health and safety interests.
Respectfully negotiating these situations tests the quality of staff relationships
with the people they serve.

If we are able to answer yes to the above questions, the benefits people will
experience are a range of relationships with many people including family,
friends, peers, co-workers and other community members.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/index.shtml




                         Integration and Inclusion

Integration and inclusion is an important and vital activity for people with
developmental disabilities. Living in a community means experiencing diversity.
Most of us live, work, and recreate in places that offer us opportunities to meet
and participate with a variety of people in a wide range of activities. People with
disabilities who live, work and recreate primarily with other people with
disabilities, due to the way services are designed around them, are missing the
opportunity to know and learn from the diversity of their community and
community members.

In order for people to become a part of their community, they must be present
and actively participating, using the same resources and doing the same
activities as other citizens. Many people with disabilities must rely on programs

                                        38
                VALUES


for connections and support for their participation in the everyday life of their
community. Without this support there may likely be limited opportunities for
people to be involved with other community members. How fully community
participation is realized by people with disabilities depends heavily on how
valuable this is seen by the staff who help support them. To determine whether
we are promoting people's integration and participation we should ask ourselves;
are we:



        working to locate homes in residential areas which are convenient to a
range of places to shop, bank, eat, worship, learn, make friends, and otherwise
participate in community life?



       assisting people to use available transportation to get where they need
and want to go?



        encouraging people to participate in a variety of activities and to try new
places and experiences outside their homes and service settings?



        encouraging people to meet other people, participate with other
members of the community (not solely other participants in their program or
staff who are paid to be with them) in shared activities, and join associations of
interest?



      advocating for occupational opportunities in businesses where other
community members without disabilities also work?




                                        39
                VALUES


The benefit that will be experienced by the person as a result of answering yes
to these questions is a range of physically and socially integrated
experiences.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/index.shtml County Guidelines and Residential
Service Guidelines at the Developmental Disabilities Guidelines Internet site




                                    Status

Status is a valued perception of us, by ourselves and by others. Such positive
recognition is important to all of us and is influenced by many factors, such as
our appearance, where we live, where we work, the kind of activities we do, what
contributions we make, etc. When people with developmental disabilities rely on
residential services for assistance in participating as a community member,
managing daily affairs, maintaining personal appearance, managing money, making
purchases, creating opportunities for making friends, maintaining personal
relationships, pursuing personal interests, finding, furnishing and keeping up
their homes, their status is at risk. This risk can be reduced depending upon
how support is given, but simply being in a social service system can affect a
person's social status in a community.

The way a program offers assistance affects individual status and/or positive
recognition, and influences the way the person is seen or perceived by others,
and by themselves. Programs should offer assistance to participants in ways
which promote people's status and credibility. They should also offer assistance
in ways that are appropriate to the age of the person, typical to other members
of the community, and contribute to the person's feelings of self-worth and
positive regard by others.

People should be encouraged to take positive roles in the settings and activities
they select. In providing assistance and encouragement, programs should pay
attention to the culture and ethnic background of participants. The greater the

                                       40
                VALUES


difference in culture and background between staff who are giving assistance
and the people receiving support, the more carefully and respectfully staff must
listen to the person and the person's allies.

Again, we can look at the way our supports are offered and ask are we
enhancing status by:



       offering assistance in ways that are appropriate to the age of the
person?



       promoting activities typical to other members of the community?



       paying attention to the cultural and ethnic background of each person?



       encouraging positive roles in the settings and activities they select?



       offering ways of enhancing personal appearance?



       advocating for jobs which offer good wages, benefits and promotional
opportunities?

If we are, the benefit derived for people will be increased status.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/index.shtml County Guidelines and Residential
Service Guidelines at the Developmental Disabilities Guidelines Internet site


                                       41
                VALUES




                              Power and Choice

The beauty of our society is our ability to have power and choice over our own
destiny. We strive to experience power, control, and choice in our personal
affairs. These expressions of personal power are essential elements that help
us gain autonomy, be self-governing, and pursue our own interests and goals. We
grow and develop by expressing our own unique preferences; by choosing and
trying things regardless of our ability to succeed; by being able to identify what
we need and find ways to obtain those things; by experiencing a variety of
situations that are new and challenging to us; and by being with others who can
teach us, through their actions, harmony and cooperation.

Some people with developmental disabilities rely on services for support and
encouragement to develop power and choice. The need for assistance to gain
autonomy, become self-governing, and pursue interests and goals; challenges
residential programs to find ways to promote the dignity, privacy, legal rights,
autonomy and individuality of each person who receives services.

To respond effectively, a program and its staff must listen carefully to what
each person is expressing in terms of desires, plans and preferences, and
discern how each person is expressing those choices. Listening means paying
attention to, and responding to, the different ways people express themselves.
We need to constantly review how we are insuring each person’s right to power
over his or her life and whether the choices being made are theirs or ours. We
can do that by looking at the following areas and asking ourselves; do we:



       focus on listening to the person and the person’s friends and allies to
discover individual goals and preferences?




                                        42
                  VALUES



       ensure that physical environments, groupings, and schedules are
organized to allow people to express individual preferences and make decisions?



       demonstrate respect for individual choices and encourage the expression
of each participant's individuality and personal power?



          protect each person's personal and environmental privacy and legal
rights?



        help participants learn about all their rights and responsibilities and to
act on what they learn?



       actively help each person pursue employment opportunities which offer a
pathway to employment and out of poverty?

The benefit of focusing on these areas for each person is the experience of
power and choice in his/her life.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/index.shtml Division of Developmental Disabilities




                               Health and Safety

Health and safety in our society requires an understanding of how to acquire the
skills, knowledge and experiences to make good decisions regarding our own
health and safety. Most of us as we grow up learn to identify good health

                                         43
                VALUES


practices such as nutrition, exercise, scheduled doctor visits, proper medication
use, etc. We make decisions by reading books, talking to other people, following
advice from our doctor, etc. We also acquire an understanding of personal
safety through experiences and information that teach us such things as fire
safety, traffic safety, being cautious with strangers, and generally being
attuned to our vulnerability.

For some people with developmental disabilities their experiences may not have
prepared them for living in their community safely. They may need support to
identify and make decisions regarding health and safety hazards. The
environments that some people have come from may have been protective and
separate from the typical community. For people who have lived or are now living
in institutions, it is possible that learning to cross the street may not have been
a necessary skill and therefore not taught; for people who have not participated
in the typical rhythms of community life it is possible they may have to learn
issues around personal protection to diminish their vulnerability to exploitation
and abuse; and for people who have had their health care needs met through
regulated, mandatory visits to an attending physician, choosing a doctor and
scheduling an appointment may be new.

It is essential that a person's health and safety be assessed and regularly
reviewed. It is also clear that experiencing many of the other benefits such as
relationships, integration, status and competence act as major safeguards to
good health and safety. These checks and balances create an additional safety
net.

We need to recognize that good health practices are crucial so that individuals
will feel well and be able to enjoy the fullness of life. Personal health is strongly
related to proper hygiene, nutrition, exercise, and safety.

We can explore our commitment to good health and safety by asking ourselves,
does our support:




                                         44
                VALUES



        meet or exceed applicable federal, state and local fire, health and
safety regulations, policies and procedures?



       carefully consider each person's health status and regularly review the
effectiveness of our efforts to assist the person to maintain good health?



        carefully consider each person's vulnerability to abuse, neglect, or
exploitation, and regularly review the effectiveness of our efforts to offer
appropriate protection?



        recognize the importance of the other benefits - relationships, choice,
valued roles, integrated activities and increased competence - to safety and
health and develop creative ways to meet health and safety needs while
increasing the experiences of the other benefits?



       invite people who know and care about the person to be involved in
keeping the person healthy and safe?

The benefit to each person, if we ensure these supports are in place, will be
good health and a safe environment.




                   Self Advocacy & Self Determination

Self-determination is the ability of individuals to control their lives, to achieve
self-defined goals and to participate fully in society.


                                         45
                VALUES


The self-advocacy movement has led to an increased awareness of the
entitlement of individuals with developmental disabilities to determine the
course of their lives. This includes the right to choose preferred work, living
arrangements, recreation, friends and sources of support.

More and more self-advocates, many of whom receive support from
organizations such as People First, have realized their dreams of living in
ordinary community settings. As they have done so, it has become clear that
when people are more connected to their communities, with supports that occur
naturally through neighbors, families and friends, they lead richer, more
satisfying and safer lives.

Self-determination: Founding principles

1. Self-determination for people with disabilities must be the founding principle
of public policy.

2. Legislation to promote self-determination or individualized funding must be
grounded in the principles of human rights and social justice.

3. Self-determination is a birthright, which must be upheld by government. It
is not a commodity to be delivered by services.

4. All people, including individuals with disabilities, have rights and
responsibilities to live as full citizens. The barriers that stand in the way must
be eliminated.

5. The development and implementation of policy must include the
interdependence of the individual; others with disabilities; the community; and
government.

6. Policy and practice must acknowledge and honor risk-taking as an essential
element of self-determination and an important part of life.




                                        46
                VALUES


7. Demands that individual self-determination should only be allowed when
certain standards are met must be rejected.

8. The many contributions made by people with disabilities, which include
innovation, problem-solving, improvements in accessibility, and other
contributions to humanity, must be recognized.

Action required to support self-determination

9. People with disabilities speak from personal experience, and so with authority
and expertise. Their views should be valued, and not regarded as having less
importance than those of professionals.

10. People with disabilities and their families must be present and central at all
planning and decision-making activities in policy development.

11. Citizens with disabilities and their supporting networks and organizations
must be in charge of developing and promoting public policy which is related to
the provision of supports.

12. Policy must be designed and implemented to ensure the inclusion of people
who are at the risk of exclusion or disadvantage on the basis of ethnicity,
culture, gender, race, religion, or sexual orientation.

13. Negative, entrenched attitudes, both within and beyond services for
citizens with disabilities, must be addressed.

14. An understanding of disability as a consequence of society's organization
and other people's attitudes (the 'social model') rather than the inevitable
result of the individual's impairment (the 'medical model') must be promoted.

15. Other citizens must be encouraged and educated to recognize that people
with disabilities are entitled to access, accommodation and supports; and that
individualized funding is the best way to target supports that meet peoples’
needs.

                                        47
                 VALUES



16. Governments must require that public funding be used to create systems
which support self-determination. Such systems will be characterized by
innovation, a focus on results, and will include people with disabilities and their
families in decision-making roles.

Resources on the Internet
County Guidelines and Residential Service Guidelines at
http://www1.dshs.wa.gov/ddd/index.shtml




                                     Conclusion

There are real differences between people with disabilities and others, but this
has little to do with basic needs, growth and understanding. Most notably, one
difference is that a person with a disability probably has a negative label and is
already at risk of rejection, segregation and limited opportunity. For someone
already faced with negative perceptions, we need to be even more conscious of
settings, appearance, language and behavior.

Understanding and applying each of these values in your daily interactions with
the people whom you support will move us to a place where people with
disabilities experience dignity and respect, age appropriate settings and
practices, valued social roles, power and choice, quality participation in
communities and opportunities to have supportive relationships.




                                         48
VALUES


                      Notes
              Thoughts

                  Questions




         49
COMMUNICATION
 EFFECTIVE COMMUNICATION
                COMMUNICATION


                  COMMUNICATION COMPETENCIES
                  After completing this chapter you should be able to:




        List the key elements of effective communication.



        Describe how communication affects the lives of individuals with
developmental disabilities.



        Explain how a caregiver’s behavior influences communication with the
person being cared for.



       Explain the impact of a person’s physical environment on their ability to
communicate.



        Describe methods of communication, other than verbal, that caregivers
might use when supporting individuals with developmental disabilities.



          List tips for communicating with individuals with developmental
disabilities.




                                          51
                COMMUNICATION



                         What is communication?
                         Why is it so important?

Communication is an essential tool in establishing and sustaining valued
relationships. The ability and desire to communicate are important to people in
every culture. All people want to be understood and have others understand
them, regardless of their particular style of interaction. Effective
communication enhances people’s opportunities to experience friendships,
express choices and develop a network of social support.

The right to communicate is both a basic human right and the means by which all
other rights are realized. If a person lacks understandable verbal
communication or an adequate communication system, it is the responsibility of
others to help the person discover a means of interacting to develop some
methods of communication.




 The inability to communicate in typical ways should never be confused with the
                       inability to think in complex ways.




                                       52
                 COMMUNICATION



                               Five Key Elements
                     Of Effective Two-Way Communication


      Listening – the basic building block - developing the listening attitude

Think about the last time you really communicated well with another person.
That experience of “good communication” was not because the person was a
smooth talker. It was because:

      The other person attended to you without distraction,
      Listened carefully to what you were saying, and
      Spoke as if he or she knew exactly what you meant.

In short, that person demonstrated a listening attitude that caused you to feel
heard and understood. As a result, you felt respected. You trusted the other
person. Listening cannot be over-emphasized. It is the basic building block of
effective two-way communication.

Effective listeners do much more than remain quiet while the other person
speaks. In addition to demonstrating a listening attitude, they intend, rather
than pretend to listen.

      they practice attending behaviors,
      they use active listening skills and
      they hear “the unspoken words.”


      Intending vs. Pretending

Really listening to another person requires that we intend to learn and
understand another’s point of view. If we intend to understand the other’s
message more completely, then listening skills come naturally. Everyone
pretends to listen sometimes. We do this because we have our own concerns at


                                         53
                COMMUNICATION


the moment. To really listen to someone, we must put aside those concerns until
we understand what the other person is saying. If you find that you pretend to
listen more often than you really listen, you will experience problems in
communicating.


     Practicing Attending Behaviors

Because listening is such hard work, we have to develop skills in focusing our
attention on the speaker. Attending closely to the speaker is crucial to
listeners. It tells the speaker that she or he is being listened to and that the
listener is committed to understanding what is being said. Good attending
practices keeps the listener focused on the speaker and away from distractions.
Placing ourselves in close physical proximity, putting our bodies in a receptive
physical posture, and keeping our eyes focused on the speaker all help to avoid
distractions and communicate our interest. These three actions are the
components of effective “attending behaviors.”


     Using “Active Listening” Techniques

Verbal listening skills are usually referred to as “active listening.” There are
several active listening skills that are important to cultivate in order to
communicate effectively.

      (a) Door-openers invite the speaker to say more about his feelings or
      problem. Examples are: “Go ahead”, “I’m all ears”, “I’d love to hear about
      it”.

      (b) Paraphrasing or stating in your own words what you heard someone
      say has many benefits. It allows you, as the listener, to get immediate
      feedback about how well you heard the message, the speaker appreciates
      being heard and you find it more difficult to “pretend” to listen.
      Examples are: “Let me get this straight” “Do I have this right?”, “You’re
      saying that …”.


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                 COMMUNICATION



        (c) Questioning or asking the speaker for more information comes
        naturally if you’re working hard to understand. It is important to avoid
        becoming an interrogator. There are three basic types of questions that
        people often use. Two of them, closed-ended questions and multiple-
        choice questions, are not very helpful in facilitating communication.
        Closed-ended questions elicit only one-word answers. Multiple-choice
        questions can cause confusion. On the other hand, open-ended questions
        invite more communication. Develop your skill at open-ended questions,
        and you will become a better listener. Example: “What are your thoughts
        about continuing to smoke cigarettes?”


       Listening to the Unspoken Word: Non-Verbal Communication

Words are not the only signals people use to communicate what is going on inside
them. It is possible to communicate by:

       Gestures,
       Facial expressions,
       Postures, bodily movements,
       Actions, and
       Voice-tones

The expressions listed above are called “non verbal communication.” They
signify our thoughts, feelings and a desire for change. These non-verbal
behaviors are usually much more reliable signals about what is going on than the
words we use. Good listeners learn to observe a speaker’s behavior and
describe it accurately. By offering feedback on what is observed, the listener
can learn more about what a person is really trying to communicate.

        Example: “Bill, I notice that your fists are clenched and you’re waving
         your arms around and talking loudly. That makes me think you feel angry.
         Am I right? Are you feeling angry right now?



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                     COMMUNICATION


                          Summary of Five Key Elements

   1.   Listening well is the first step in two-way communication.
   2.   To be an effective listener, develop “the listening attitude”,
   3.   focus your attention on the other person,
   4.   Use verbal listening skills, and
   5.   Listen to “the unspoken word.”



                   Communication Breakdown and its Remedy

There are a number of listener responses that will likely result in
communication breakdown. They include:


 Ordering or Commanding.            Example: “You need to tell your roommate how
        you feel.”

 Warning or Threatening.           Example: “You’ll be sorry if you don’t go to
        work today.”

 Moralizing or Preaching. Example: “You ought to calm down.”
 Lecturing or Advising. Example: “Go take a long walk and you’ll feel
        better.”

 Judging or Criticizing.        Example: “Quitting your job would be a really bad
        idea.”

 Name-calling or Shaming.              Example: “Great! Mr. Tough Guy can’t take a
        little conflict, so you’re going to split!”

 Analyzing or Diagnosing.         Example: “You’re just mad because your
        roommate has a CD player and you don’t.”




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                 COMMUNICATION


 Minimizing the problem or talking the other person out of his/her
        feelings. Example: “It’s not so bad. I’m sure you’ll work this out with
        your roommate.”

These responses tend to cut off communication. These responses usually make
people feel embarrassed. When people feel embarrassed they usually withdraw
from communicating with other people. The responses discussed previously do
the following:

        Pose solutions to problem statements, saying, in effect “you need me to
         tell you how to solve your problems”, or
        They diminish the self-worth of the other person.

Instead of responding in these ways, use the listening techniques noted above,
to encourage the other person to continue talking about their feelings and
problems and help them find their own solutions.

Communication stops or is reduced when we use stereotypes or labels in relation
to another person. Using stereotypes means that we assume that a person’s
behavior will follow a pre-set pattern. We neglect to allow them the possibility
of behaving differently. We assume what the person will do before we do it.
Stereotypes stop communication. They do not allow us to really listen and reply
to another person.

 The biggest danger to communication caused by stereotypes is:

        making assumptions that are not correct about a person’s behavior.
        believing that we already understand another person’s “internal
         experience.”

 It’s easy to slip into stereotyping, no matter how much education or experience
 we have. All that has to happen is that we stop believing that each person’s
 experience is unique and start categorizing people.



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                COMMUNICATION


       Examples: “People with Down Syndrome are docile, loving and eager
        to please.” “People with developmental disabilities will always need
        to be taken care of and protected.”

The way to stop stereotyping is to stay interested in the other person, know
that you have to work hard to discover what someone else is thinking and
feeling, and to use effective communication skills.

Labeling is similar to stereotyping in that labels prescribe how people think and
feel and they are rarely accurate. Once we characterize people with labels, we
run the risk of believing we already know much about them. When that happens,
communication breakdown has arrived. The remedy to labeling is to get to know
individuals by spending time with them, really listening to them and sharing
yourself with them.



                             Communication Tips

Practicing the skills you’ve read about so far will enhance your ability to
communicate effectively in your work and personal life. Here are some additional
tips to help you interact in a respectful way with individuals with specific
disabilities.


 When talking with someone who uses a wheelchair:
       Try to position yourself at eye level in front of the person.
       Remember that the wheelchair is part of that person’s body space and
        avoid leaning or hanging on it.
       Unless it’s an aspect of your friendship with that individual, don’t pat
        someone using a wheelchair on the head or shoulder.


 If you are thinking of offering assistance to a person with physical
challenges, ask if help is needed and wait until the offer is accepted.




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                COMMUNICATION


 When talking with someone who has difficulty speaking, be patient and wait
for them to finish. Don’t speak for the person and never pretend to understand
if you’re having trouble. Instead, let them know what you have understood and
allow them to respond.


   When talking with a person who is hearing impaired, speak to that person,
not through a companion or sign language interpreter. Look directly at the
person and speak clearly, slowly and expressively. For those who lip-read,
position yourself so that you face the light source and keep your hands or other
objects away from your mouth while speaking.


 When you meet someone who is visually challenged, always identify yourself
and others who may be with you. If you are talking in a group, remember to say
the name of the person to whom you are speaking.


   If you’re unsure what to do, don’t be afraid to ask.



            Physical Environment and Caregiver Behaviors
                      Impact on Communication

In order to communicate, people need something to communicate about! If the
place where the person lives (the environment) is not very interesting,
individuals will not be inspired to share their responses and feelings. An
interesting and stimulating environment means more than having physical objects
that interest a person. It also means having access to a range of challenging and
stimulating activities. A caregiver who demonstrates a positive, interested
attitude encourages individuals to share ideas and feelings.




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                COMMUNICATION



                         Alternative Communication

We all have communication barriers, meaning we don’t communicate very well
with other people. Sometimes, the barriers are a result of:

      personality traits, such as shyness, or
      regional, cultural or ethnic background.

The items listed above can be barriers (something that stops a person from
communicating) to communication can result in enormous frustration as we
struggle to make ourselves understood. Everyone wants to be understood.
Everyone wants someone to listen to what they are trying to tell someone.

For example, imagine the how it feels if a person from another part of our
United States came to live in the Northwest and was searching in the grocery
store for pound cake. The grocery clerk directs the person to the aisle with
the pancake mix. Or imagine a person with no verbal communication who is
trying to communicate with store clerks. Sometimes it is assumed the person
has nothing to say.

When we add one or more disabilities to this mix, the struggle to communicate is
even more difficult.

      A person with sight impairment has lost access to facial expressions,
       body language and gestures which help sighted individuals understand
       their environment and the people around them.
      An individual who has a hearing impairment lacks the benefit of voice
       intonation, which would help that person interpret the nuances of
       communication, such as humor.

There are a number of communication systems that can be useful for people
with visual or hearing impairment or other communication challenges. These
include systems that use gestures such as manual sign language, pantomime and


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                COMMUNICATION


natural gestures; English-based language systems such as large print English and
Braille; figure-based systems, Bliss Symbols and Electronic communication
systems.

American Sign Language (ASL) is the fourth most commonly used language in
the U.S. and one often used by people with developmental disabilities. It is a
unique language with its own grammar, syntax and structure. The drawbacks to
its use are that it is difficult to teach to a person with severe disabilities and
most staff assisting people with disabilities are not fluent in it, though they may
know some signs. The advantages are that it can be easily modified and it can be
used both visually and tactually. For that reason it is a useful system for people
with both visual and hearing impairment.

It’s important to pay attention to all forms of communication from people you
support. People who don’t communicate in typical ways still communicate. For
example, a person with deaf-blindness may manipulate a staff person’s hand by
placing it on her shoe in order to get help taking her shoe off. Such gestures
should be recognized as communication. In fact, all behavior is a way of
communicating. Challenging behaviors can become a form of communication for
people who lack other ways of sharing their feelings. When faced with a
person’s challenging behavior, it’s important to try to understand what that
behavior is saying about the person’s feelings and needs.



                                   Conclusion

All people communicate. We need to:

       Be attentive to each person’s individual means of communication and
       Be respectful of all the ways they may have of expressing their
        preferences.
       Remember, if a person lacks an adequate system for communicating
        needs, desires and feelings, he or she must be assisted to develop a way
        to communicate with others.


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                COMMUNICATION


       Practice effective two-way communication because it is essential in
        maintaining rewarding relationships and supporting personal growth and
        quality of life.

Resources on the Internet
http://www.diversityshop.com/store/10comvid.html The Ten Commandments of
Speaking to a Person with Disabilities
http://nadc.ucla.edu/Communic.cfm Arts and Disability
http://www.disabilityisnatural.com/peoplefirstlanguage.htm People First




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COMMUNICATION



                         Notes
                        Notes
                 Thoughts
                Thoughts
                      Questions
                    Questions




           63
         PLANNING
AN INTRODUCTION TO INTERACTIVE PLANNING
                PLANNING


                    PLANNING COMPETENCIES
              After completing this chapter you should be able to:




           Identify the benefits of using a person centered planning process
rather than the traditional planning methods used to develop supports for people
with developmental disabilities.




           Identify key elements involved in interactive planning done with
people with developmental disabilities.




            Identify ways to include people with developmental disabilities and
their families/guardian if applicable, in the planning process.




           Identify the required planning document for the setting in which you
work and list ways you can have a positive impact on that plan.




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                PLANNING




                                  Introduction

Society today sees children and adults with developmental disabilities
differently than it has in the past. Many changes have occurred since the late
1960's and 1970’s, when "de-institutionalization" was in full swing. As more and
more children and adults with disabilities leave public institutions or do not
enter them at all, their presence in communities is being felt and seen. People
with disabilities are going to school, shopping, attending church, working, playing
in parks, and going to the movies.

Historically, people with disabilities have been viewed as deviant and deficient-
without skills and talents. Deviancy is behavior or appearance that is outside
the social norm. What is considered deviant varies from culture to culture.
Often the real deviancy is in the eye of the beholder. This flawed perception
has been shaped by standards of acceptable behavior, cultural values, and the
way these values are interpreted. In the past, behaviors exhibited by people
with mental retardation have generated rejection, segregation and ridicule. The
reasons for these behaviors may have more to do with people being subjected to
menial or childish tasks, intrusive methods of control, or to degrading
environments than with perceived unprovoked outbursts or other forms of
inappropriate expression.

People with disabilities have been viewed as sick and having little value to
society. They are diagnosed or assessed and then treated by a series of
professionals in a hospital or treatment facility in an attempt to "fix them."
This is known as the medical model and is practiced in many public institutions
and educational settings for people who are mentally ill, mentally retarded and
elderly.




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                PLANNING




                               Planning a Future

Today, much of society has a clearer vision for people with developmental
disabilities. We have made many advances in technology, teaching strategies,
legislation, medication and attitudes. This new vision supports individuals and
families within their neighborhoods and communities. These values include the
following, taken from A New Way of Thinking:


 Base the provision of services on the informed choices, strengths and
needs of individuals with developmental disabilities and their families, rather,
than forcing them to choose among a narrow range of pre-determined services
and approaches.


 Plan and provide services based on peoples' needs and abilities, rather than
providing more services than are needed, or not providing those services that
are needed.


 Help the individuals, and their family to gain access to typical resources
available in the community-such as jobs, houses, and friends rather than
replacing those resources with segregated disability specific services and
specialized supports.


 Coordinate services around the life of the individual (including
cultural/ethnic heritage) rather than around the needs of staff and services.


 Recognize the abilities of ordinary citizens, children, co-workers and
neighbors to teach people skills that will help them to participate, to model
appropriate behavior and to develop relationships.




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                PLANNING


Implementing these new values and accomplishing new outcomes, means letting
go of service practices that support old assumptions. For example, the
traditional approach to planning for people with disabilities is to focus on
deficits. This deficit-finding is cumulative as it continues year after year. For
each skill a person acquires and each objective a person meets, new deficits are
identified and new goals developed. The traditional planning processes often end
up justifying the devaluation of people with disabilities.

There are at least three major problems with the traditional approach to
planning:


    It is deficit-based. It begins with an assessment process that often
highlights the person’s deficits. When the person is defined in terms of deficits
the person is in constant need of services and "fixing." In this situation the
person is never ready to fully participate in community life.


    It relies on the opinions of professionals or paid caregivers, rather
than the opinions and preferences of the individual and the people close to
that individual. People with disabilities are often prevented from taking
initiative or directing action to affect their own lives.


    It tends to establish goals that are already part of existing programs
and tries to fit the person into these goals. This approach is utilized even if
the goal/program is not exactly what that person needs or wants.

While the funding, from state and federal governments, that support individuals
must be based upon an assessment of need, once that is completed it is very
important to plan to meet the person’s needs in positive way.

Human services should provide a bridge to the community for people with
disabilities. Building on people’s capacities and opportunities in networks and
communities allows desirable futures to be created and supported.



                                        68
                PLANNING




                   Basic Values of Interactive Planning

    Interactive Planning utilizes a team approach. The team must always
include the individual with a disability and their guardian, if applicable. It should
include anyone currently providing service and supports, paid or not, and any
others the individual would like to include.


 Interactive Planning builds descriptions of capacities and opportunities
in people and environments. It helps people discover the capacities that
already exist within a situation or person.


 Interactive Planning seeks ideals.       People planning together are motivated
by a collective vision that enables them to clarify values and find direction in
complex situations.


 Interactive Planning brings together the people who know the individual
and who are committed to learning together to more effectively provide
support. Through the group, participants learn to collaborate, reflect, clarify
values, act and evaluate to find new directions.


 Interactive Planning helps people invent and experiment with new
courses of action. As people take action, they discover strategies that address
the situations they face.


 Interactive Planning inspires innovation.       Interactive planning groups are
guided by a vision of a more desirable future, dependent on the commitments of
people to take action and renewed by people's capacity to learn together. The
groups are regenerated by their capacity to address problems, to reflect, to act
and to learn.


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                PLANNING




                 Key Elements of Interactive Planning

    The person whose plan is being developed should be in attendance. If
the person needs assistance in understanding the planning that is occurring,
someone outside the program, who knows the person well, and can be an
objective voice for the person, should attend with the person.


   Plans should reflect the person's interests and choices. Care should be
taken that these are defined around the person's desires not the program's
needs.


    Planning should take into account the cultural/ethnic background of the
individual. The plan should include strategies for developing and supporting
those connections.


   Planning should build on the person's capacities, not deficiencies.


   Goals in the plan should reflect more than just skill acquisition. They
should focus on community involvement, relationship building and making choices.


   The individual should be encouraged to run their own planning meeting
and to invite the people they want to have there.


    The planning process should take into consideration basic information
about the person’s background, major moves, current dynamics, family
issues, community involvement and general health.


   No plan is “cast in concrete” and can be changed, based on the person’s
expressed preferences.


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                 PLANNING




                                 Planning Tools

There are several similar planning tools used in conjunction with services
provided to people with developmental disabilities. The following is a brief
description of each of them. The IISP, Negotiated Care Plan and Negotiated
Service Agreement while similar, are each specific to a type of residential
support setting.

Plan of Care (POC)

A Plan of Care, or POC, is a DDD document that is based on an assessment of a
person’s needs. The POC outlines the support needs and interests of the
individual. The plan identifies the responsibilities of the service provider and
others in supporting the individual. Other individuals or programs that may
provide support include: the vocational provider, therapists, nurses and
advocates.

A POC meeting will include, to the greatest extent possible:

      The person
      Appropriate staff of DDD
      The person’s parent, guardian and/or advocate
      Representatives of the agencies or facilities which are, or will be,
       primarily responsible for implementation of the plan
      Anyone else the person chooses to invite

A POC is a planning document, not an authorization for services.




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                PLANNING


Individual Instruction and Support Plan (IISP)

An IISP is a provider specific document that outlines the specific requirements
for carrying out the residential services portion outlined in the POC. The IISP
must describe the methods of instruction and/or support needed to reach the
individual’s goal.

The IISP must be based on the goals of the POC, reflect the individual’s
preferences, and have the individual’s agreement.

The IISP identifies activities and opportunities that promote one or more of
the following benefits:

         Health and safety
         Personal power and choice
         Positive recognition by self and others
         Integration in the physical and social life of the community
         Positive relationships and
         Competence and self reliance

Negotiated Care Plan/Negotiated Service Agreement

A Negotiated Care Plan is a written plan developed between the adult family
home provider and the resident or the resident’s representative. A Negotiated
Service Agreement is a written plan developed between the boarding home
provider and the resident or the resident’ representative. The two documents
are basically the same, just a different name in a different setting. Providers
are required to develop a plan for each person residing in their home/facility
shortly after the person’s admission. The assessment and preliminary service
plan (the POC developed by DDD) create the foundation for the Negotiated Care
Plan/Service Agreement. It is expected that, over time, the provider will learn
more about the individual’s personal needs, interests, and preferences beyond
what is identified in the DDD service plan. As a result, the Negotiated Care
Plan/Service Agreement will provide specific details about how the individual’s



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                   PLANNING


needs and preferences will be addressed in the adult family home or boarding
home.

There are many ways that a Negotiated Care Plan/Service Agreement can be
developed and used. The plan should assure that the individuals’ rights are
respected, encourage supports that are consistent with the residential
guidelines, and provide a balance of rights with health and safety concerns. The
plan should include what the person is able to do and what the adult family home
or boarding home provider, other providers, family members, or friends agree to
do. Included in the plan are things such as mobility concerns, eating and
nutrition, bathing, personal hygiene, supervision needs, and activities. A copy of
the plan must be given to the DDD case/resource manager each time it is
completed or updated (at least every twelve months).




                                         Conclusion

People with disabilities are individuals first. They are people with diverse skills,
dreams, aptitudes, and life experiences. It is your personal relationship with
the person as an individual, the skills and resources you both have, and your
knowledge of the community and its people, that will best help you to enhance
his/her life.

Resources on the Internet
http://www1.dshs.wa.gov/ddd/waivers.shtml


Some information used in this section is taken from It's Never Too Early, It's Never Too Late,
written by Beth Mount and Kay Zwernik, Publication No.421-88-109, 1988.




                                              73
PLANNING



                        Notes
                Thoughts

                    Questions




           74
 BEHAVIOR
UNDERSTANDING BEHAVIOR
                BEHAVIOR


                        BEHAVIOR COMPETENCIES
                   After completing this chapter you should be able to:



      Identify the guiding principles of the Positive Behavioral Supports
process.



       Define the “ABCs” and describe how to use that process to discover the
function of behavior.



       Explain why it is critical to understand the function of behavior before
developing support plans.



        Define reinforcement and identify ways to utilize it as a tool to increase
an individual’s ability to be successful.



       Identify the problems with using punishment to manage behavior.



     Identify behavior management techniques that are not allowed under
DSHS policies and applicable laws.



        Identify factors that can positively and negatively influence the behavior
of individuals with developmental disabilities.




                                           76
                BEHAVIOR



                           Understanding Behavior


Human beings spend much of our time trying to understand why those around us
act the way they do. When people behave in ways that are successful and
pleasant for themselves and others, we want to know how to continue this
success. When people do things that cause problems, we want to know how to
correct the problem. It can be difficult to understand exactly why another
person does something (or refuses to do something else). Many times, we can’t
even explain our own actions. What people do depends on a number of different
factors. These factors are the same for all of us, whether or not we have a
disability.

The primary duty of caregivers and support staff is to create environments for
people that respect their cultural preferences and meet the needs of their
disability. The staff are to provide opportunities for experiences that allow
people with disabilities to succeed in living the lives they choose for themselves.
Each individual is different. What works for you may not work for me. When we
have the best possible environments and experiences based on individual need,
we all tend to do our best. When situations and interactions are not adequate to
meet individual needs, we are all likely to have problems.

The term we use for what people do is behavior. Though the word is common, it
is often misunderstood and misused. There is no way to observe how a person
feels or thinks. We can only infer the way people feel and think by the way they
act or by what they tell us. When we discuss behavior, we are talking about
observable actions, such as smiling, talking, eating and dressing. In everyday
conversation, we often confuse the difference between the actions we observe a
person perform and our interpretations of the inner thoughts or feelings the
person may be having. Here are some examples:

 “Chris is laughing” is a description of behavior (we can observe it).
“Chris is happy” is an interpretation (and it might be wrong).


                                         77
                BEHAVIOR



“Pat is sitting down” is a description of behavior (we can observe it).
“Pat is tired” is an interpretation (and it might be wrong).

“Lynn kicked the wall” is a description of behavior (we can observe it).
“Lynn is angry” is an interpretation (and it might be wrong).

People exhibit an enormous number of behaviors each day. All behavior has a
purpose. Many caregivers and support staff use the word behavior only to refer
to undesirable actions. Even a person who does things that cause harm to
themselves or others spends most of the day performing behavior that is
acceptable. The more a person enjoys environments and experiences that work
for them, the more likely he or she is to act in a way that is successful for them
and acceptable to others.

In Chapter Two, you learned a convenient way to look at basic needs by
considering Health, Safety, Power & Choice, Community Integration, Status
(Positive Recognition), Satisfying Relationships, and Competence (Needed
Skills). People who are healthy, safe, making their own decisions, connected and
contributing to their communities, treated with dignity, involved with friends
and family, and who have the skills they need, rarely do things that cause
problems. Of course, we all struggle at times. Very few people would describe
their lives as being perfect in every way. Caregivers and support staff are not
required to make the world a perfect place. We try our best to meet individual
needs in a realistic way. The goal is reasonable accommodation.

Resources on the Internet
http://www1.dshs.wa.gov/pdf/adsa/ddd/policies/policy5.14_09_05.pdf
http://intra.ddd.dshs.wa.gov/program_support/docs/rs_guidelines.doc




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                BEHAVIOR



                        Behavior as Communication

Behavior (observable actions) can be thought of as a form of communication.
What we see people do tells us something about what they are thinking and
feeling. The simplest way to determine why a person does something is to ask
them. However, if a person has difficulty communicating through words, signs,
writing or pictures, the “language of behavior” may be the best way to
understand his or her intentions.


For some people with developmental disabilities, what others call
     “problem behavior” may be the only way they have to
   communicate displeasure, pain, fear, frustration or need.

The terminology of behavior offends some people, who see discussion of
behavior as uncaring or demeaning. When we talk about behavior, we are not
ignoring the fact that people have inner thoughts, feelings, opinions and beliefs.
However, if we are not sure about these things, we risk resorting to guesses and
judgments that can cause great harm. We use the concept of behavior to give
us a starting point. Since the word behavior only refers to what can be
observed, most people can agree on that. We may not know why Kim dances or
why Taylor throws a drinking glass, but we can all agree on what they are doing.

To interpret the “language of behavior,” we must look at more than just what
the person does. Environments influence behavior. Environments can be very
complicated. We can only interpret behavior in context.

Contexts influence how a person reacts to what is going on at any moment. For
example: How does the person feel? Is the setting warm, cool, bright,
uncomfortable? Is the person hungry, thirsty, or full? Has the person slept
well? Are there other people in the environment? What has happened prior to
this moment? How does the person perceive the situation? What is this
person's history with the people who are with him? What is the history with


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                BEHAVIOR


this particular location? Any or all of these things can influence the way a
person behaves.

In addition to looking at the context, we can examine the immediate events that
happened before and after the person did the behavior we are trying to
understand. We can think of the sequence of events by using the “behavior
chain:”


              Antecedent---> Behavior---> Consequence

Antecedent means “happening before.” Morning is antecedent to night, June is
antecedent to July. When we use the term antecedent in interpreting behavior,
we are referring to antecedent stimulus. A stimulus is something that is felt or
perceived. It can come from inside the person (such as pain) or outside the
person (such as a sight, sound, or another person’s comments). The antecedent
for a behavior is whatever the person experienced that triggered the action.
All behavior has an antecedent, even if we do not recognize what it is.

Behavior, as you have learned, is what the person did (or didn’t do) that is
observable. Feelings and attitudes are not behavior. To interpret the language
of behavior properly, we must look at one thing at a time. Sometimes behavior is
given a label such as “nice” or “rude.” These terms are not behavior, but refer
to many different behaviors that may occur at different times or in different
situations. When we lump different behaviors together under a judgmental
label, it becomes much more difficult to understand the reason why each one
happens.

Consequence is a term that is often misunderstood. It means what happens
after the behavior. Depending on the consequences we experience, we may be
more likely or less likely to repeat the behavior in the future when we are in the
same situation and experience the same antecedent. Consequences that make
the behavior more likely to happen are called reinforcement. Consequences
that make the behavior less likely to be repeated are called punishment.
Unfortunately, in everyday conversation, people generally use the word
consequence as if it means the same as punishment (“If you do that again, there

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will be consequences”). All behavior has a consequence (something that happens
after), but not all behavior has reinforcement or punishment.

While the A—B—C chain helps us interpret behavior, people and their lives are
so complex that perfect understanding is not always possible. People are not
robots, and their behavior is not always predictable. Nevertheless, by looking
closely at Context, Antecedent, Behavior, and Consequence, we can often
make progress in understanding why people do what they do.

If a person repeats the same or similar behavior in the same context while
experiencing the same antecedent, it is usually assumed that the person is
getting reinforcement. This is not always obvious to others. If Robby hits a
housemate when the housemate sits close by, and Robby then gets into trouble,
many people will say this is an example of punishment. But if Robby repeats this
pattern, it is likely the behavior is working in some way from Robby’s point of
view. Perhaps the reinforcement is when the housemate runs away. Although
the behavior certainly causes problems, in one sense the behavior is successful
for Robby, who may want to avoid a certain person. If a behavior succeeds for a
person, we say that it functions (works) for them.

When we try to interpret the language of behavior, we want to know why
someone is doing a particular thing. Another way to say this is that we want to
know the function of the behavior (how it works for the person from their point
of view). It is very likely that any behavior that follows a repeated pattern is
functioning in some way.

Behavior functions in two ways: to GET something we want or need (pleasant
interaction, activities, stimulation, control, pleasure), or to AVOID something
we don’t want or don’t like (unpleasant interactions, pain, discomfort, fear).
Problems sometimes arise, however, when people use a behavior that is not
accepted by others to get what they want, to stop something they don’t like or
to avoid something negative.

It is important to remember that the A—B—C chain is not just for people with
developmental disabilities. These influences affect all of us. When you see a

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shoelace is untied (antecedent), you tie it (behavior) and the shoe stays on your
foot (consequence). When the telephone rings (antecedent), you answer it
(behavior) and you get to talk to a friend (consequence). Context, reinforcement
and punishment will affect even simple behaviors like these. In the context of a
day at the beach when you are barefoot or wearing sandals, the shoelace
behavior chain will not happen. If you are in the middle of supper (context), you
may not respond to the ringing telephone antecedent; or, if the consequence of
answering the phone has been unpleasant (a sales pitch or bill collector), this
punishment makes it less likely you will pick up the phone at certain times.

When we think of our own behavior, we see that most of time, the factors that
influence the way we act are a natural part of life. We tend to repeat behavior
that works well (functions) for us, and avoid behavior that is unsuccessful.
When we see a friend (antecedent), we smile (behavior) and she smiles back
(reinforcement consequence). When we see a stove (antecedent) and we touch it
(behavior), we may be burned (punishment consequence). This common, normal
pattern is how we learn and continue to do most of our behavior. The value of
normalization reminds us that the same is true for people with developmental
disabilities. Unless it is necessary to meet an individual’s need, we should avoid
artificial systems that use reinforcement or punishment to influence the way a
person chooses to behave.




                           Problems with Behavior

To support someone in the pursuit of a quality life in the community, it is crucial
to have an understanding of community expectations of behavior. Certain
environments and situations have expected rules and norms of public behavior.
For example, it is expected at a food store that people will browse quietly, make
selections, and pay for their purchases at a cash register when they have
completed shopping. There are similar rules in a post office, a bank, at a
concert or on a job. Some rules are informal while others are mandated by law
or regulations. The ways in which people behave help define the level of their
success in those settings.


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When someone does not understand those environmental expectations, or does
not have the skills normally expected in that environment (e.g., waiting in line, or
paying for items before eating them in a grocery store), a mismatch occurs
which limits an individual’s opportunity for success, participation, status, and
friendship.

Sometimes when we infer how a person feels or thinks, we might use labels to
describe a set of behaviors. If we say "John is mean" or “Jane is stubborn" or
“Sam is aggressive,” we stereotype their behavior. Behavior is what you do,
not who you are. When we use negative descriptions we have certain
expectations about how the person will behave. Having expectations for
problems can set up situations in which a person will play the role everyone
expects, and problems are actually more likely to occur.

The history of people labeled with developmental disabilities is filled with tragic
stories of people who have been confined, punished, tormented, and stripped of
dignity by others who tried to “help” them by changing or modifying their
behavior.

In the Values chapter, you learned that our services and support for people with
developmental disabilities must be based on core values, including self-
determination (being in charge of your own life). We must not discard these
basic values even if we do not approve of a person’s actions. When we try to
control or manipulate other people’s behavior, we are denying their right to make
choices and control their own lives.

Before we consider a person’s actions to be “problem behavior,” we need to ask
whose problem it is. Sometimes people with developmental disabilities are said
to have “behavior problems” simply because the caregiver does not like what is
being done. Just because a person disagrees, chooses unusual activities, or
refuses to do as he or she is told, we should not see this behavior as a problem
as long as it is not causing harm to anyone’s quality of life. Disagreements are
often best helped by listening and being open to changing the way the caregiver
behaves (see the chapter on Communication).

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As a caregiver, your job is to help promote positive behavior by providing
individualized support services. When a person’s actions present a danger to
health, a severe disruption to others, or a barrier to the person’s own goals, we
should seek to understand the meaning of the behavior in order to help the
person meet his or her needs in a way that is safer, healthier, and more
acceptable to the standards of the community.




                                   Punishment

Some parents and authority figures try to discourage undesired behavior by
using punishment, which is a type of consequence that makes a behavior less
likely to be repeated. When the word punishment is used legally, it refers to
penalties or infliction of physical, psychological or emotional pain or loss, which
is not allowed in adult family homes, boarding homes or in any other
program for individuals with developmental disabilities in Washington. These
practices include hitting, pushing, pulling hair, giving a cold shower, or using any
technique which has the purpose of causing someone pain. Milder forms of
punishment include scolding, lecturing, or limiting access to certain places or
activities. While some of these may not technically be illegal, punishment of any
kind is likely to damage relationships, reduce dignity, and deny the right of
choice. Some key reasons why punishment is not useful include:

      Punishment does not teach new appropriate behaviors. It only discourages
       what is currently being done. Remember, a pattern of behavior is
       established because it functions (works) for the person. If an
       undesirable behavior is taken away from a person, he or she may have no
       remaining way to deal with a problem or meet a need.

      Punishment is generally effective only for the time it is in use. Once the
       punishment stops, or the punisher is not around, the problem behavior is
       likely to return or even become worse.



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      There are positive alternatives to punishment. It is more humane and
       respectful (not to mention legal) to prevent problems by providing
       environments and experiences that promote positive behaviors, and to
       show or teach new ways of doing things that function (succeed) at least
       as well as the behavior that causes problems.

      The use of punishment has negative side effects. The person who is being
       punished may avoid or try to escape from the environment where the
       punishment occurs and the person delivering the punishment. The person
       who is being punished may withdraw and do less in general, even reducing
       appropriate behaviors. A staff person cannot provide positive supports
       and learning experiences if he or she is busy trying to find and punish
       behavior. The person can learn new behaviors to avoid punishment. For
       example, an individual may begin lying to avoid punishment. People will
       usually substitute another problem behavior for the one that is being
       punished.




                                Reinforcement

Instead of using any form of punishment, it is far better to help the person to
learn a better way of getting the same results. People learn new behavior and
continue old behavior through reinforcement. To reinforce something is to make
it stronger. If you do well on a difficult task, and someone you respect says,
"You did a good job," then you may tend to use the same approach again. If so,
your behavior was reinforced. Whether we are aware of it or not,
reinforcement is important for all of us. When that person complimented
(reinforced) you, they helped you to learn and value a new skill.

Understanding how reinforcement works is an important tool for anyone who
teaches new skills or is trying to help people change ineffective behaviors. The
most important kind of reinforcement is intrinsic: that is, it comes from within
the person. The pride and satisfaction of doing well, feeling good about
yourself, being strong and confident, is very powerful in all our lives. We begin


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to develop intrinsic reinforcement when others tell us we have done well. The
most common and natural form of reinforcement we receive from others is
praise or compliments. Successful, positive behavior is supported when the
person is in an environment where his or her efforts succeed, and he or she
receives sincere praise for doing the right thing.

There are many opportunities to reinforce behaviors in a dignified way. This
makes a big difference for everyone. People feel and “act better" in a positive
environment. Managers in the corporate world realize this, and receive
extensive training in establishing positive work environments for staff. People
who are effectively reinforced grow, learn more, and are more productive.

There are some things that must never be manipulated, controlled or used as a
contingency. Basic human dignity and rights mean that:

       Friendships are not qualified with "only if you do”

       Meals and nutrition are not compromised with "when you finish..."

       Privacy and personal possessions are not removed with "since you
      did not..."

An important consideration is to be aware of what is in the natural environment.
You do not want to reinforce people with childish rewards or demeaning
activities. Reinforcers should not make people stand out as different. Giving
rewards should not be artificial. Finally, reinforcement should be available in
the context of the normal setting. Artificial programs may change behavior, but
do very little ultimately to meet a person's real needs.

Probably the easiest and best way to decide on reinforcement is to ask the
person. If you do this, you may be quite surprised at the answers you get.
When you ask the first time, a person may have difficulty telling you. But with
experience, he or she will find it easier. If a person has difficulty
communicating, be a sensitive observer. Watch what the person prefers to do.



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It is usually easy to tell when someone enjoys something or is completely
immersed in an activity.

When you use reinforcement correctly and respectfully, you can help individuals
enhance their own capabilities and self-image. When reinforcement is
manipulated as a power and control tool, people usually tend to find ways to
"beat the system." This is true for all of us.




                       Quality of Life and Behavior

Let’s take a closer look at how life issues can lead to problems, and how they can
be resolved. The examples given and the names used are fictional, but the
situations are from real life.

                             Health and Safety

Nobody does their best when they don’t feel well. Unusual behavior can be the
first (and sometimes only) symptom of medical or mental health problems.
There are several stories of people who underwent restrictive behavior
programs for self-abuse only to discover later that they were in pain with a
physical problem such as a tooth abscess or stomach ulcer. Medical and physical
issues may include reactions to medications, infections, menstrual cycles,
constipation, allergies, etc. We should not confuse health problems with
disability labels. A person’s disability does not cause problems with behavior.
Problems arise from the person’s experiences (past and present), including
health, environment, skills, and interactions with others.

EXAMPLE: Mr. Jones was a man with a diagnosis of autism, which for him meant
he was not good at telling others how he felt. He began to exhibit the unusual
behavior of moaning, squinting his eyes, and pinching the bridge of his nose.
Right after doing this, he would begin to break things, such as lamps and
televisions. When a support staff asked him to stop, he would go to his room,
close the door and curtains, and lie down on the bed. Staff learned that when


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he was younger, he was sent to his room whenever he misbehaved. A doctor
diagnosed Mr. Jones as having migraine headaches, and prescribed medicine. His
caregivers learned to watch for headache signals and offer help before
problems occurred. With these supports, he stopped breaking things. The pain
of a headache was an antecedent, and going to a dark quiet room was a
consequence that served the function of avoiding (some of) the pain. Mr. Jones’
difficulty in communicating and his history of being punished were part of a
context that led to this problem. Mr. Jones was not bad, mean or aggressive.
He was trying to solve a problem in the only way he had.

A NOTE OF CAUTION: Although health issues can contribute to problems with
behavior, caregivers must be careful not to try to diagnose illness themselves.
On the other hand, if we take someone to the doctor just because of a “behavior
problem,” we can cause additional stress to the person, and perhaps waste time,
money and the doctor’s patience. If we see unusual behavior, that is a signal to
watch for any symptoms of health problems. We schedule the doctor’s
appointment when symptoms are observed, and we report the symptoms to the
doctor.

                              Power and Choice

We all like to do things our own way, yet we all must make compromises to get
along with others. When we are asked to compromise too much, or when we
don’t understand why rules are imposed, we are likely to become uncooperative.
One of the most common roots of “problem behavior” is being given orders or
rules the person does not want to follow. Caregivers must make sure that rules
and requests are reasonable and understood. Where it is possible, service
recipients should be involved in making house rules and following their own
preferences regarding living arrangements, activities, companions, food,
clothing, etc.

EXAMPLE: Ms. Smith did not speak or use sign language, and she would
sometimes refuse to get out of the car when arriving at activities or when
returning home. She was given a set of pictures of people, places and objects
that could be attached with Velcro to a daily schedule or carried with her in a

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special pouch. Ms. Smith was encouraged to choose her own activities. When
she had a way to indicate what she wanted and didn’t want to do, her caregivers
were surprised to see how cooperative she was. This story is also an example of
improving skills or competence.

                       Status (Valued Social Roles)

People are unique and want to be recognized as having something special to
contribute. When this recognition is lacking, it is not unusual for someone to find
another way to stand out, and it may be in a way that causes problems. One
great way to enhance status is by giving the person a chance to help, through
volunteering, owning a pet, or getting involved in community service.

EXAMPLE: Ms. Green was a cheerful, polite woman who loved to help others.
She did very well at her job, but at home she was discouraged from helping and
told that her caregivers would take care of all the household duties. Small
decorative objects (knick-knacks) began to disappear frequently. When people
began to look for them, Ms. Green would quickly “find” the missing item. At first
she was lectured about stealing and told she might have to move out of the
home. Then she was given the opportunity to be in charge of the knick-knacks:
protecting, dusting and arranging them. She was very happy to prove how
helpful she was, and the home looked beautiful with all the attention she gave to
the decorations.

                           Community Integration

Boredom, isolation and loneliness are behavior problems just waiting to happen.
Caregivers do not always have the resources to provide enough activities outside
the home. Part of the interactive planning process (see Chapter Four) is to
identify activity preferences and how they can be realized. Work, school,
church, community centers, libraries, friends, family members, festivals and
neighborhood projects are all sources of low-cost or free opportunities to get
out of the house and get involved.




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EXAMPLE: Mr. Ford lived in a small town. After graduation from high school, he
went to an activity center for several months until budget cutbacks limited his
access to only two mornings a week. His days consisted of watching television,
flipping through magazines, and staring out the window. He began to leave the
home without notice in the middle of the afternoon, and might be gone for
several hours. His caregivers were very worried about his safety, but they could
not follow him because there was only one caregiver in the home and she had to
stay there with Mr. Ford’s housemate. His support team (caregivers, family,
friends) worked hard to develop a regular schedule of activities both at home
and away: taking walks, shopping, going to the post office and library, cooking,
growing flowers, and attending dances and parties at the A.R.C. Everyone
pitched in to provide him with transportation and company for these activities,
so there was no great burden on anyone. Mr. Ford was much happier and safer
being where he wanted to be and doing what he wanted to do. This story is also
an example of improving safety and choice.

                                Relationships

Some of us are very sociable; others get by with only a few close associates. No
matter what the individual’s preference, we all need other people in our lives.
When a person is in need of human contact, he or she may resort to behavior
that is dangerous or offensive. Caregivers and support staff should do what is
possible to help service recipients to establish new contacts, maintain the ones
that are there, and get comfort and support when faced with loss and grieving.

EXAMPLE: Ms. Waters’ family lived in another city two hours away. She was
out of school and did not have a job. She was shy around her housemates and
would watch them, but did not join in their games and activities. However, she
would follow the caregivers around the house and distract them from their
duties. She would pick up the telephone extension when others were trying to
have a conversation, and monopolize the attention of any visitors or guests. Her
caregivers at first saw her as spoiled and selfish, but then realized she was
trying to meet a basic human need. They helped her develop a list of “phone
buddies” and programmed the numbers into a telephone with large buttons that
could hold photos, so she could call her friends by herself. Ms. Waters was

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encouraged to create beautiful greeting cards for birthdays, holidays, and
special occasions. Caregivers helped her mail them to people she knew, and she
became “famous” for sending cards. Her sister and brothers began to call and
visit more frequently after they started getting cards. She was invited out by
people she had known in the past, but who had lost touch until she began sending
cards. Her caregivers carefully observed the kinds of games that she and her
housemates enjoyed, and provided the kinds of games everyone could enjoy
together. Before long, Ms. Waters was joining in with the others and laughter
filled the house. Her caregivers set aside time to take a walk or have a cup of
tea with her each day. As she became more involved with people, Ms. Waters no
longer had the need (or the time) to distract caregivers and annoy their visitors.
This story is also an example of improving status and community integration.

                                  Competence

If a person doesn’t know how to do something the right way, they may attempt
to do it in a way that can cause problems or even be dangerous. To be successful
we must learn how to do things, and we don’t learn unless we are taught or
shown. When a person’s living situation changes, his or her former skills may not
be adequate to meet new standards or challenges. It has been noted that people
who live in institutional settings do not magically learn social skills and
community norms on the bus ride to the group home.

EXAMPLE: Mr. Cook had lived with his mother all his life, and was a great help
around the house as she grew older. When she passed away, in addition to
coping with grief, Mr. Cook had to adjust to moving into an Adult Family Home.
One day, the caregiver found him in the kitchen putting away clean dishes. She
began to correct him for this, complaining that he was putting things in the
wrong place. She added that his hands were dirty and he was spreading germs.
She told him to stay out of the kitchen and leave the dishes to her. Mr. Cook
began to shout at her and threatened to hit her with a frying pan. Since Mr.
Cook appeared to be “aggressive,” he was asked to move to another home. His
new provider understood the context and meaning of his behavior. The first
day, she taught him where all the dishes went and how to wash his hands
thoroughly. She told him he was welcome to help put things away, as long as he

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washed his hands first. Mr. Cook gets along very well with his new caregiver,
and she sees him as friendly and helpful. This story is also an example of
improving relationships, status and choice.

                              Questions to Ask

Following are some questions to ask yourself if a person begins to behave in a
way that is unusual, disruptive or harmful. Answering these questions may
provide clues to a possible problem in the person’s life.

      Is the person sick or having pain or discomfort?
      Has the person started, stopped or changed medicine?
      Is the person sleeping and eating well?
      Has the person experienced trauma or abuse?
      Did the person choose his or her home/job/activities/companions?
      Is the person in charge of his or her daily activity schedule?
      Does the person choose his or her own food/activities/clothing?
      Does the person have enough to do?
      Is the person involved in his or her community life?
      Does the person have a way to contribute?
      Does the person have enough friends?
      Has the person suffered a loss of someone important?
      Do caregivers and others communicate respectfully?
      Do caregivers and others use or understand the person’s language?
      Is the person being ignored for long periods?
      Are others given more attention?
      Does the person know how to do what is needed or wanted?

With the right supports, most so-called “behavior problems” can be avoided or
resolved. It is not always easy, but the effort pays off in fewer problems and
safer, happier homes for everyone concerned.




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                            Functional Assessment

Sometimes the best efforts of caregivers are not enough to deal with behavior
that is seriously disruptive, damaging or dangerous. The following chapter will
help you learn how to deal with a crisis. However, going from crisis to crisis is no
way for anyone to live.

 If a person exhibits repeated behavior that is damaging or dangerous, and
 you cannot resolve it with the skills you have, ask for help before serious
                               harm is done.

To help with complicated and baffling problems with a person’s behavior, you may
request technical assistance provided through the Division of Developmental
Disabilities. The person sent to help is usually a psychologist or behavior
specialist with the training and background to perform an in-depth assessment
of the problem. This is a detailed process known as functional assessment or
behavioral functional assessment. This assessment is a more refined way of
looking at the same factors you have learned about in this chapter. Since a
person’s behavior generally is repeated because it works (functions) for them,
determining the function of a behavior is another way of answering the question,
“Why is the person continuing to do this?”

Positive behavior support must be conducted with the dignity of the person as a
primary regard ... a person's behavior is reasonable from that person's
perspective. There is logic to the behavior. The process of conducting a
functional assessment is an attempt to understand that logic.

Many caregivers and support staff do not have the tools and training to perform
a comprehensive professional functional assessment. DDD Policy 5.14, Positive
Behavior Support, contains important information on functional assessment and
positive behavior support plans. The policy also has detailed guidelines to assist
caregivers and support staff in conducting functional assessments and
developing positive behavior support plans.

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Additionally, this training is available through many colleges and through
technical assistance from DDD. The DDD regional offices also offer training in
functional assessment and positive behavior support plan development
periodically. We need more people with these skills, so seeking out this training
may appeal to you. Whether or not you ever learn to do a functional assessment,
as a caregiver you have a very important role to play. Your observations,
documentation and reporting provide much of the raw information that the
professional will use in completing the functional assessment. A functional
assessment includes the following steps:

      Describe the behavior
      Gather information:
          o Observe the behavior
          o Assess the Environment
                 Individual’s physical/medical status
                 Physical environment
                 Caregivers’ skills & interactions
                 Reinforcement factors
      Develop a hypothesis (theory) based upon the information gathered.

The functional assessment provides the basis for developing a positive behavior
support plan. Behavior support plans are developed so that people with
disabilities will be able to enjoy all of the benefits of an integrated lifestyle in
their local communities. These plans must enhance a person's opportunities to
achieve these valued benefits of community life. Support plans themselves are
often a mix of strategies that are designed to teach replacement behaviors as
well as to impact environments to prevent problem behaviors from occurring.
Whatever the contents of a behavior support plan are, its goal must be an
enhanced lifestyle for the person.

When a positive behavior support plan is needed, the caregiver will play an
important role in helping determine what parts of the plan are realistic and
achievable in the place and with the people involved. The best experts creating



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the best plans will not help if the plan is not followed. You must be willing to be
honest and open about your ability to follow the plan.

Agencies/homes/facilities/programs are required to establish policies and
procedures regarding the use of behavior principles. You should review these
documents along with your human rights policies and DDD policies before
participating in the use of any positive behavior support plans. When developing
plans, remember:

       Treat individuals with the same respect you would want for yourself.

       Act as a good model for behaviors. One of the most important learning
      tools is what we ourselves do in different situations.

       Most people tend to act the way they are expected to act.

       It is best not to ignore dramatic bids for attention. Ignoring only
      encourages a person to become more dramatic. It is better to voluntarily
      give attention to a person sooner than be forced into giving it later.

       A person will continue a ‘negative behavior' because - however unlikely
      this first appears -it somehow meets a need.

       People usually do things to get their needs met - not to get themselves
      labeled.

       The way that a person’s challenging behavior makes us feel (frustrated,
      angry, sad, etc.) is probably the best cue to understanding how the person
      is feeling.

       A person will choose to get negative attention rather than be ignored.

       The way a person acts should produce as natural a result as possible.
      Saying to a person, “When you threaten to hurt yourself with broken
      glass, we will have to get you help for this problem” is a more natural

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      consequence than saying, “If you don't stop doing this, we will punish you
      with restraint or medication or loss of privileges.” Remember, punishment
      for behavior is prohibited by DDD policy.




                                   Conclusion

Helping a person to have more successful behavior by using principles of positive
behavior support (PBS) requires much of caregivers and the programs for which
they work. It requires an understanding of the person, creativity in the
environment, a shared value system of mutual dignity, and knowledge of behavior
technology.

The sensitive use of positive behavior support can be an effective tool in helping
an individual learn new skills and better and more useful behavior. This is crucial
to successful participation in settings when the community expects certain
behaviors. Whether on the job, at home, or going to a store, knowing how to act
in and manage the environment determines how individuals are perceived and
what they can accomplish.

The potential for abuse of behavioral support techniques is great. The use of
special language, the scientific aura, and the power of controlling others tempts
some caregivers and support staff to overstep their proper roles. We must
understand both the productive use of principles of behavior change and the
harmful potential consequences of treating someone as an object of a “program.”

By talking with the person and those who know the person well, and carefully
analyzing situations over time, we can learn much about why people act in certain
ways. This helps us to restructure situations in partnership with individuals so
their skills and appropriate behavior grow.

When we are able to create environments that recognize the functions of
people’s behaviors and help to teach and support socially accepted alternative



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behaviors, then people will have the opportunity to behave effectively,
efficiently and with full human dignity.

Resources on the Internet
http://www.tash.org/teleconferences/pbs/index.htm
http://www.tash.org/committees/pbs/index.htm



                            Parts of this chapter were taken from:
Enhancing" the Lives of Adults" with Disabilities, Dileo, Dale and Nisbet, Ian; O'Neill et. al;
“Focus on the Practical” by Dana Henning, Ed.D., in Aging/MR IG Newsletter. Spring, 1991;
Lovett (1986); “Positive Behavioral Supports for Students with Challenging Behaviors” Julie
Fodor, A. Lee Parks, Carol Cloud @ University of Idaho CDHD




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                        Notes
                Thoughts

                    Questions




           98
          CRISIS
CRISIS PREVENTION AND INTERVENTION
                CRISES


                           CRISIS COMPETENCIES
                  After completing this chapter you should be able to:



         Identify behaviors in people with developmental disabilities that might
constitute “normal stress”.




        Define “Crisis”.




          Differentiate the behaviors an individual who has a crisis exhibits from
mental illness.




         Identify the Principles of Crisis Prevention and Intervention.




         Identify what types of situations require outside assistance and at
what point that becomes necessary.




         Name several ways you, as a caregiver, could provide support to an
individual experiencing a crisis.




        List steps to be taken when crisis or danger to people is immediate.




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                                  Introduction

You have spent many hours learning how to support, care for, and work with
people with developmental disabilities. By now you have learned that the Division
of Developmental Disabilities strongly believes in supporting individuals in a
positive manner and is committed to improving the quality of life of the
individuals it serves. While it is true that people with developmental disabilities
have unique challenges, we are going to start with the following basic premise:


          We all have our good days and our not-so-good days.         
 Like everyone else, people with developmental disabilities experience life’s
                          NORMAL ups and downs




                               Handling Stress

When a person is “STRESSED OUT”, they may react differently than usual. A
person may, for example, be overly excited, tearful, anxious or irritable; they
may seek privacy in an effort to “cool down” or take some quiet time to think, or
maybe even do something to distract themselves from their problems, which
helps them to “forget” about the bothersome situation. On the other hand, a
person who is stressed out may seek the company of someone else or attempt to
call attention to their frustration.

The way in which each person handles stress is different. Everyone has a unique
coping style for dealing with ordinary stress. Some people do not give any
indication at all that they are stressed out!

Normally, this period of stress is short-lived and once the person has had some
time to sort it out, they return to their normal state of being. The point here is
that everyone has their own way of coping and managing their stress.


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Keypoint

Do not try to challenge someone about their choice of coping skills unless the
health and safety of the person and/or others is threatened. When a person is
stressed, the last thing they need is to be told is that they “are doing it wrong”.
This doesn’t mean you can’t offer suggestions, or options, but do draw the line at
ordering them around. The best time for suggestions is after the stressful
incident is over.

Occasionally, life throws all of us curve balls. A curve ball is an unusual and
unexpected event, or series of events that are unwanted. These out-of–the-
ordinary things or events that take place in our lives can turn life completely
upside down and make the day-to-day things we have to do seem very difficult,
if not impossible. If those things are too much, we “lose it”.




                                       Crisis
                   Let’s talk about what a crisis is and isn’t.

A crisis is defined as a stressful situation that overwhelms an individual’s ability
to cope. A crisis is not a mental illness. A crisis is not usually on-going. A crisis
usually happens when the stressful situation is Unusual, Unexpected and
Unwanted. Crisis can be caused by a disastrous event, a real or perceived loss
of a basic need, and a real or perceived absence of support. In other words, a
person is likely to go into crisis when there is:

          An unusual, unexpected and/or unwanted significant event
          A loss of options
          A lack of support
          A perceived loss of options or lack of support




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               Crisis Prevention & Intervention Principles

There are many things you personally can do to avert a crisis. It is important to
remember that despite your best efforts, sometimes, CRISIS HAPPENS!

You can help someone through a crisis by:


     Making a commitment to see the individual through the crisis
A mistake new caregivers often make is to ignore the situation, thinking either
it’s not really my business or it’s not really a problem compared to other
problems of the moment; such as helping to get dinner ready on time, figuring
out the weekly schedule or other work duties. Being a caregiver is not easy as
there are many, many demands placed on you. Try to be flexible with the things
you can.

If you only have a minute to deal with the individual who might be in crisis, then
let that person know you are aware that they are upset and as soon as you finish
what you have to do, you can talk with them. If the person seems OK with that,
then go about your other tasks and forget about it for the moment. If the
person seems further upset by this, then see if you can’t be the one that is
flexible and change your focus to them.

  Once you make a commitment to see the person through the crisis, half
                          your job is done.


    Staying calm and neutral
The last thing a person in crisis needs is for you, the caregiver and support
person, to get upset and make it “your problem”. Individuals you support are
relying on you to keep a clear head and to stay objective! When you’re upset,
then neither of you can think clearly!

                          It’s their crisis, not yours.

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                CRISES



 Being interested and involved, but do not take over
A person in crisis needs to be heard. They may be confused by their feelings or
their thoughts but remember, this is a temporary situation and with options and
support, the crisis can be resolved. It is important to respect an individual’s
right to make decisions. Remember, as long as there is no immediate threat to
the individual or other people’s health and safety, there is no reason to get
alarmed and resolve it for them. This doesn’t mean that you can’t help to guide
an individual into exploring options. It means don’t decide for them the best
course of action to take. Help the individual explore options and offer your
support.

                Respect an individual’s right to be themselves.




                              Providing Supports


          Listen quietly:
Allow the individual to share their thoughts freely. This lets the person know
that you are concerned and care about their well-being. Be confident in your
ability to help. The ability to communicate concern plus your ability to show
confidence in this individual is very, very important in crisis prevention and
resolution.


          Ask Questions:
Show your support by asking questions related to the subject at hand. DO NOT
change the subject. Do not talk about how the individual’s problem is affecting
you or others. The real issue is “how is this situation affecting this person”. By
listening and asking questions, you are helping the person to define the problem.
Defining the problem is an important step in both crisis prevention and



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                 CRISES


intervention. Doing this in a non-threatening, non-intimidating way, you are able
to use your intelligence, experience and skills to evaluate the present situation.

Gather information about what led up to the problem. Summarize the problem
verbally so the individual can say, “yes, this is it” or “no, it’s not that, it’s ____”.
Remember to be hopeful. By being hopeful yourself, you are letting the person
know that, while things may be feeling hopeless in the moment, it won’t always be
this way.

 Don’t interrupt the individual while they are processing their situation, as
                 long as no one is at risk of being harmed.


          Explore the person’s feelings:
Encourage the individual to express their feelings. If the person doesn’t seem
able to do this, encourage the exploration of feelings. This is a process known
as “Bringing the Feelings into the Open”. It is important that you help the
individual identify feelings. People in distress often have a difficult time
identifying which feeling or feelings they are having. Help the person identify
disappointment, anger, anxiety, sadness, regret, grief or other feelings. The
role you have in helping people to identify their feelings, is a very important role.
It is a proven fact that once feelings are expressed, the person can begin the
“recovery” process.

                    Ask the individual how they are feeling.
                   Don’t tell them how they should be feeling!


         Validate the Individual’s Feelings:
In an understanding tone, (soft spoken, calm manner of voice) convey to the
person that what they are feeling is not unusual or wrong, and that feelings
matter. If you aren’t sure what to do next, ask the person! Many people
wrongly believe that people with developmental disabilities don’t have the
capability of knowing what they want or need.




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                CRISES



          Explore past coping attempts:
Individuals with developmental disabilities have had to cope with unusual,
unwanted and unplanned events before. In doing that, they have developed the
skills necessary to help themselves out of this crisis as well. By exploring with
the person the ways they have coped in the past, the individual in crisis has the
opportunity to remember past situations in which they were upset and got
through it, and can now draw upon those experiences in the present situation.

You should help the distressed individual take inventory of those past coping
skills. Ask the person how they coped with whatever feelings they identified
earlier. Take this opportunity to again encourage the person to get through the
current situation and remind them that you are there to help support them and
support the expression of their feelings.

Once you have explored with an individual their past coping skills, (and maybe
even reminded them of coping skills you have seen them use to resolve a
problem), invite them to explore whether they can use those same skills or any
other skills they have or can think of, to resolve their current situation.


         Explore the Alternatives:
By exploring the alternatives you are actually assisting the individual to get from
a “problem identification mode” to a “problem-solving mode”. This move also
shifts the activity from one area of the brain, the emotional side to another,
more rational area of the brain, which also helps decrease the physical symptoms
of stress (heightened awareness, irritability, anxiety, impulsivity, nervousness,
rapid heart beat and clouded thinking).


         Formulate a Plan:
Once you have explored the alternatives, talk with the individual about which
alternatives to put into a plan of action. The plan may be short-term or long-
term and may include a variety of activities or only a few. The important thing



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                CRISES


here is that the person, with your help and support, feels the power and reward
of knowing there is something he or she can do to make the situation better.


          Support the Person in Implementing their Plan:
Sometimes the best made plans go awry. There is no sense in developing a plan
that isn’t realistic or do-able. The plan needs to be realistic. Consider, with the
individual, some alternatives if there are issues which make it difficult to
implement the plan.


         Bring Closure to the Interaction:
It is important that you help support the individual in transitioning away from
the Intervention. If a person doesn’t naturally do this you can help. Let the
person know that you really enjoyed spending time with them and you hope that
they enjoyed it too. Remind them you are there to support them. At this time,
it might be appropriate to invite them to help you with a task.

It is sometimes difficult for an individual to “disengage” from the enjoyable
activity of talking with you and spending time with you. In these situations, it
might help the person to relax if you suggest an activity that you know they
enjoy. For some, it’s setting the table, for others it’s listening to music or
playing cards with another household member. It is not uncommon for a person
to want to stay near you. This is fine too, so long as it doesn’t interfere with job
duties. If it does, you may have to gently remind the individual that you have to
attend to other duties, but you will check back in with them later.


         After All is Said and Done; Check in with the Individual:
Any person, who has recently been in crisis, or near crisis, will have a period of
insecurity shortly afterwards. This is a normal response. You need to be aware
of this and take steps to reassure the person that you are still there for
support.




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                CRISES


       OPTIONS and SUPPORT are the two most critical factors in            
                  crisis prevention and intervention.

Individuals who do not speak and can not verbally problem solve with you still
experience crisis just like everyone else. All of the steps outlined in the section
should be used with them and tailored to their communication style. It might
mean you as a caregiver must gather more information from records, significant
others, long term caregivers, observations, etc. In these situations you must be
even more vigilant about potentially stressful events which might be unusual,
unexpected, and unwanted.

We have talked primarily about Crisis Prevention. These skills and techniques
will help you support individuals in times of unwanted, unusual and unexpected
circumstances and situations. In addition, if used on a regular basis, these skills
will help improve each individual’s daily life and yours as well. Individuals
experiencing stress and crisis affect your ability to do your job. Minimizing
stress and crisis helps improve your job satisfaction as well!




               INTERVENTION STRATEGIES AND SUPPORTS

We can’t forget that sometimes, despite your best efforts, a person who gets in
crisis may stay in crisis. Not only will they stay in crisis, their needs will go
beyond what you are capable of providing for and/or beyond your own coping
skills. Below are additional resources to assist in those situations.


          Crisis Clinic Services
             Crisis Counseling for the individual (over the phone)
             Referral to other social services agencies


          Crisis Intervention Services
             Phone consultation and support
             Referral and Information Services

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         CRISES


        Evaluation for additional services (emergent and non-emergent)
        Evaluation for psychiatric hospitalization


   Primary Health Care Practitioner
      Physical examination to rule out medical causes for
        agitation/discomfort.
      Referral to appropriate mental health services (includes
        supportive therapies for grief, depression, loss, etc)


 911 or Police
   Use only when the immediate health and safety of the individual
    or others is at risk such as:
      When a weapon is involved
      Objects are thrown
      Serious pushing or shoving
      Other life threatening situations


        In situations where violence or aggression is likely or
    anticipated, it is important to prioritize the sequence of events that
    take place in order to keep everyone safe. The priorities should be
    to:
       Call 911 or Police
       Protect other individuals
       Protect the troubled person
       Protect staff

                 TWO WORDS TO REMEMBER




         OPTIONS                            SUPPORT



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                CRISES


Resources on the Internet
http://www1.dshs.wa.gov/ddd/mental.shtml DDD Mental Health program site
http://suicidehotlines.com/washington.html Crisis contacts in Washington State

As a licensed or contracted provider of services to vulnerable adults you are a
Mandatory Reporter of alleged or suspected abuse or neglect per RCW
74.34.035. To report abuse or neglect of clients residing in licensed or
supported living settings call the Complaint Resolution Unit @ 1-800-562-
6078. Report abuse not associated with licensed or supported living homes to
Adult Protective Services (APS). For more on your responsibilities as a
mandated reporter click this DSHS Mandatory Reporter Web Page link.




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CRISES


                       Notes
               Thoughts

                   Questions




         111
 LEGAL RIGHTS
AN OVERVIEW OF LEGAL ISSUES AND
      INDIVIDUALS’ RIGHTS
                LEGAL RIGHTS


                     LEGAL RIGHTS COMPETENCIES
                   After completing this chapter you should be able to:




       Explain how the rights of individuals with disabilities compare to those of
the general population.



       List the rights of individuals living in adult family homes and boarding
homes and the laws that support those rights.



       Describe how caregivers can help individuals to exercise their rights.



       List ways a caregiver must safeguard each individual’s confidentiality.



       Describe the three types of guardianship an individual with
developmental disabilities might be subject to and why.



       List less intrusive alternatives to guardianship.



       Describe the responsibilities, powers and limitations of a guardian.



       Describe the relationship between service providers and
guardians/families.




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                LEGAL RIGHTS



                           All People Have Rights

Historically, individuals with developmental disabilities have been separated
from the main stream of community life. Many times they were restricted in
their personal freedoms and segregated in institutions without adequate
treatment, education, habilitation or medical care. In many cases, their basic
human needs were not met and their rights as citizens of the United States
were ignored.

During the last two decades, a great deal of legislation and litigation has
occurred in the field of developmental disabilities. The result of this has been
an affirmation of the basic human and legal rights of individuals with
developmental disabilities.

ALL citizens of the United States enjoy the same spectrum of rights,
regardless of disability. The United States Constitution and Bill of Rights apply
to ALL U.S. citizens. These seemingly self-evident statements need to be
emphasized because of the long history of denial of rights to citizens with
disabilities. This chapter will describe basic rights related to service provision
and individuals with disabilities as well as a few basic legal concepts that may be
useful to you in your work. Most important for you to remember is:




                                       
 Being a service provider does not give you the right to deny, abuse, abridge or
negate ANYONE’S basic human and well established legal rights simply because
                 they happen to have a developmental disability.




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                LEGAL RIGHTS



                            Important Legislation

Americans with Disabilities Act of 1990 (ADA)
The Americans with Disabilities Act (ADA), was approved by Congress and
signed into law on July 26, 1990. The ADA (P.L. 101-336) gives civil rights
protection to individuals with disabilities in private sector employment, all public
services, public accommodations, transportation and telecommunications.

Internet site: http://www.usdoj.gov/crt/ada/adahom1.htm
Americans with Disabilities Act


     Civil Rights Act of 1964
This act mandates protection of the civil rights of persons who have a
developmental disability.

Internet site: http://www.usdoj.gov/crt/cor/coord/titlevi.htm
Civil Rights Act of 1964


     Developmental Disabilities Act of 1975
The Developmental Disabilities Act of 1975 (P.L. 91-517 as amended by P.L. 94-
103) sections 110 through 113 of Title II mandate the creation of an evaluation
system for individuals with developmental disabilities and for the programs that
serve them; detail the special rights of people with developmental disabilities;
require individual habilitation plans; and establish a network of protection and
advocacy.

Internet site: http://www.usdoj.gov/crt/ada/cguide.htm
A Guide to Disability Law




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                LEGAL RIGHTS


      Title V of the Vocational Rehabilitation Act
Sections 501 through 504 of Title V of the Vocational Rehabilitation Act
address various employment discrimination issues involving people with
disabilities.

Internet site: http://www.jan.wvu.edu/sbses/VOCREHAB.HTM
State offices of Vocational Rehabilitation


 The Social Security Act
Titles XVI, XIX, XX specifically address funding issues involving people with
disabilities, which include monthly financial support, medical assistance and
community services.

Internet site: http://www.jan.wvu.edu/sbses/VOCREHAB.HTM
Social Security Act



                                     Rights

The United States Constitution guarantees certain rights to all citizens
regardless of their disability. These include the right to:

      Access the courts and legal representation;
      Free Association;
      Contract, own, and dispose of property;
      Equal educational opportunity;
      Equal employment opportunity;
      Equal protection and due process;
      Fair and equitable treatment by public agencies;
      Freedom from cruel and unusual punishment;
      Freedom of religion;
      Freedom of speech and expression;
      Marry, procreate, and raise children;


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                 LEGAL RIGHTS


    Privacy;
    Service in the least restrictive environment; and
    Vote.

It is your job as a caregiver to ensure you do not limit any individual’s rights.

Washington State further outlines rights, for those individuals receiving
services in adult family homes, boarding homes and DDD certified residential
programs, in state law, regulations and DSHS policies.

“It is the intent of the legislature that individuals who reside in long-term care
facilities receive appropriate services, be treated with courtesy and continue to
enjoy their basic civil and legal rights. It is also the intent of the legislature
that long-term care facility residents have the opportunity to exercise
reasonable control over life decisions. The legislature finds that choice,
participation, privacy, and the opportunity to engage in religious, political, civic,
recreational, and other social activities foster a sense of self worth and enhance
the quality of life for long-term care residents. The resident has a right to a
dignified existence, self-determination and communication with and access to
persons and services inside and outside the facility. A facility must protect and
promote the rights of each resident …” (excerpts from RCW 70.129).

Individuals with developmental disabilities have a right to be treated as
competent (unless determined otherwise by a court of law) and afforded their
freedoms of choice. As you support individuals with disabilities be clear that
this is the person’s home, not a treatment setting! At every possible
opportunity you, as a caregiver, should defer to the decision making of the
individual ensuring their choices are given feely, without coercion or force. At
no time may an individual residing in an Adult Family Home or Boarding Home be
requested or required to sign a document waiving any or all of their rights.

Listed below are some state laws and regulations protecting individual’s rights
that are relevant to this curriculum. You will find excerpts from these
documents in the resource section at the end of this manual.



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               LEGAL RIGHTS


LAWS

RCW Chapter 70.129 sets forth residents’ rights applicable in adult family
homes and boarding homes.
http://apps.leg.wa.gov/RCW/default.aspx?cite=70.129 Long term care

RCW Chapter 71A covers Division of Developmental Disabilities operations
http://apps.leg.wa.gov/rcw/default.aspx?Cite=71Ations

REGULATIONS

WAC 388-76 (Adult Family Homes)
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-76

WAC 388-78A (Boarding Homes)
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-78A

WAC 388-110 (Contracted Residential Care Services)
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-110

WAC 388-101 Certified Community Residential Services and Support
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-101

WAC 388-825 (DDD Service Rules)
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-825



It is important that you review each of these to be clear about your
responsibility as a care provider in protecting, respecting and promoting each
individual’s rights. The office of the Long Term Care Ombudsman has a
brochure that summarizes many of these rights. A copy of that can be obtained
by calling 1-800-562-6028. The Division of Developmental Disabilities flyer
“DO YOU KNOW YOUR RIGHTS?” is available at this Internet site:
http://www1.dshs.wa.gov/ddd/publications.shtml#brochures Client Rights.



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                LEGAL RIGHTS



                                 Confidentiality

Lots of information is used in providing quality services and supports to people
with disabilities within a licensed or certified program. The information is in
many forms, such as medical data, social and family histories, professional
evaluations, behavioral data, functional skills assessments, etc. When used
appropriately, this information helps caregivers provide individualized and
comprehensive services and supports.

Much of the information collected and maintained is very detailed and extremely
personal in nature. Privacy issues are complicated by the fact that there are
often many people and multiple agencies involved in the delivery of services.

Individuals receiving services have the right to expect all personal information
regarding them to be kept confidential. Programs should only collect and
maintain information/data that is genuinely needed.

Personal information, which is protected by confidentiality, includes far more
than the pieces of paper in a file. It includes any verbal information that might
be shared regarding an individual. Discussions and conversations about the
individual must occur only in the context of your care for them and only with
persons for whom you have permission to share such information.

Individuals with disabilities or their guardian, if applicable, must provide written
permission for you to share any information about them, written or verbal. You
must be clear about who you will share information with, what information you
will share and why. Documentation of this permission must be kept in the
individual’s file.




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                LEGAL RIGHTS



                                    Consent

Informed Consent, as a phrase and a concept, has many facets and means
different things to different people. For the purposes of this training
curriculum, Informed Consent means an individual has enough information, can
understand the implications of alternatives and is making a decision voluntarily.

All adults are presumed to be competent to give informed consent under our
laws. A court of law is the only body that can determine otherwise. An
individual is not assumed to lack this capability simply because he/she has
developmental disabilities. It can be difficult to determine whether any given
individual in any given situation is capable of giving informed consent. You may
need to provide support to a person to assist them in making an informed
decision. It is VERY important that you NOT use coercion or force to make a
person provide consent.



                                  Guardianship

Guardianship is a legal proceeding in which a court determines that someone is
unable to manage his or her personal or financial affairs. Upon making this
determination the court delegates a person called a guardian to attend to the
needs of the person, and the court supervises the activities of the guardian.
The basic premise of guardianship is that a person lacking the ability to assert
some or all of his/her rights is benefited by the appointment of some one to
assert those rights on his/her behalf. There are three types of guardianship:
guardian of the estate, guardian of the person, and limited guardian.


     Guardian of the Estate
http://www.nolo.com/definition.cfm/Term/1F74D335-5F74-4BBB-
A9299B998C67349C/alpha/G/
Guardianship of the estate affects the control of a person's money, property
and other possessions.


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                LEGAL RIGHTS



     Guardian of the Person
http://olrs.ohio.gov/ASP/olrs_FAQ_Guardianship.asp
Guardianship of the person affects decisions about health care, living
arrangements, consent to habilitation plans and comparable matters.


     Limited Guardian http://olrs.ohio.gov/ASP/olrs_FAQ_Guardianship.asp
The law provides that any guardianship can be limited. An individual may not need
a guardian of the person or estate but may need assistance in a given situation
or concerning a specific issue. The limitations are defined in the guardianship
order.

Each right or authority granted to a guardian has been taken away from the
individual. Guardianship has far reaching ramifications to the civil and human
rights of an individual. Guardianship should not be pursued lightly, without
considering all possible alternatives. Both guardians and support staff should be
clear about the scope of the specific guardianship.

The guardian’s responsibilities/duties are to:


   Protect the individual,
   Encourage the overall personal development of the individual,
   Exercise power and authority in the best interests of the individual, in such
a way as to encourage the individual to become capable of caring for self and
making reasonable judgments, and live in the setting least restrictive to the
person’s freedom and appropriate to the person’s needs.

Guardians are not obligated to personally house, train or provide care to the
person, but to assure that the resources available are used in his/her best
interests. Guardians are not liable for an individual’s financial encumbrances.
Guardians are appointed by the court and subject to the court’s orders.




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                LEGAL RIGHTS


Guardianship is a relationship between the guardian and the individual. It is
NOT up to the service provider to enforce the wishes of the guardian. The
guardian has no authority to dictate the rules or requirements of service
providers. If the agency/provider has policies that are in conflict with the
guardian’s wishes the guardian has no authority to dictate another policy to the
agency employees or provider.

An effective working relationship between guardians, program staff and the
individuals receiving support is essential to achieve quality outcomes for
individuals with developmental disabilities.



                       Alternatives to guardianship

There are many other ways to support people in safeguarding their rights that
are less restrictive than guardianship. Alternatives might include:


     Teaching – Instruction in areas such as money management and
independent living skills may enable the person to make decisions and manage
independently.


     Providing Support Services – Staff/providers may be able to provide
enough information and support for an individual to make informed decisions.


      Special Bank Accounts – An individual may be better able to make sound
financial decisions by setting up a bank account such as a dual signature account,
authorizing direct deposit of funds and/or instituting a limited withdrawal
amount.


     Representative/Protective Payee – If the need for assistance has to do
with managing money and the main source of income for the person is some sort
of federal supplement, i.e., SSI, SSDI, SSA, VA, another person may be
designated to receive and manage these federal benefits.


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                LEGAL RIGHTS



      Trust – A trust is a plan for placing control of a certain amount of funds
in the hands of a trustee, who manages the funds for the benefit of the named
individual. This requires the assistance of an attorney to create.


      Power of Attorney - Power of Attorney transfers the right to make
decisions for someone else without giving up those rights. Power of Attorney
requires that the person understand what he/she is authorizing the other
person to do.


           Durable Power of Attorney - This generally remains valid even when
      the person becomes incompetent. This must be executed while the person
      is legally competent.
          There are many advantages and disadvantages to using Power of
      Attorney, which should be explored with legal council prior to considering
      this alternative.



                                    Conclusion

The values we have in regard to our freedom to make decisions in our life, to
have control over what we participate in, and what we agree to, are extremely
important to all of us. This is no less true for people with disabilities. In your
job of providing direct service, you are in a position to protect and promote
individual rights. Your understanding of the information in this chapter will
make this task easier.

Supporting individuals with developmental disabilities to lead quality lives is a
process that takes time and will no doubt include some conflict. As a provider
you must work to keep your focus on the person you support and their desires,
keeping your values out of the situation. You work not only with the individual
with developmental disabilities but with their guardian and/or family, other
service providers, and state agency personnel, to name a few . It is in the best
interest of the person with a disability if all parties include that person in

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               LEGAL RIGHTS


decisions, and work in a cooperative manner to find mutually acceptable answers
to difficult questions.




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LEGAL RIGHTS


                             Notes
                     Thoughts

                         Questions




               125
RESOURCES
 RESOURCES




            TABLE OF CONTENTS




Web Site Addresses                             Page 128




Revised Code of Washington (RCWs)              Page 130




Washington Administrative Code (WACs)          Page 135




Ombudsman Program Frequently Asked Questions   Page 141




Additional Readings                            Page 142




                      127
  RESOURCES




Web Site Addresses




              128
                RESOURCES




                     Web Sites Addresses




      www.dshs.wa.gov/ddd
     Look at the resource link section. There are many sites to visit.


      www.aasa.dshs.wa.gov/professional



      www.collegeofdirectsupport.org



      www.thearclink.org



      www.qualitymall.org



      www.tash.org



      www.self-determination.org

Other resources on the web:
http://www1.dshs.wa.gov/ddd/index.shtml
http://www.aasa.dshs.wa.gov/
http://www1.dshs.wa.gov/



                                     129
RESOURCES




     RCWs




            130
 RESOURCES




          RCWs




Chapter 70.129                   Page 127
Long-Term Care Resident Rights




Chapter 71A.10                   Page 128
DDD General Provisions




Chapter 71A.12                   Page 129
DDD State Services




                     131
      RESOURCES




                RCWs




                    Excerpts from


        Chapter 70.129
Long -Term Care Resident Rights
   http://apps.leg.wa.gov/RCW/default.aspx?cite=70.129




                           132
   RESOURCES




             RCWs




                 Excerpts from


    Chapter 71A.10
 DDD General Provisions
http://apps.leg.wa.gov/RCW/default.aspx?cite=71A.10




                        133
   RESOURCES




             RCWs




                 Excerpts from


      Chapter 71A.12
    DDD State Services
http://apps.leg.wa.gov/RCW/default.aspx?cite=71A.12




                        134
RESOURCES




     WACs




            135
 RESOURCES




          WACs


Chapter 388-76 Adult Family Home Minimum        Page 137
Licensing Requirements
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-76




Chapter 388-78A Boarding Homes                  Page 138
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-78A




Chapter 388-101 Certified Community Residential Page 139
Services and Support
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-101



Chapter 388-825 DDD Service Rules               Page 140
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-825




                   136
           RESOURCES




                     WACs



                        Excerpts from


              Chapter 388-76
Adult Family Home Minimum Licensing Requirements
      http://apps.leg.wa.gov/WAC/default.aspx?cite=388-76




                              137
     RESOURCES




               WACs



                  Excerpts from


       Chapter 388-78A
          Boarding Homes
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-78A




                        138
        RESOURCES




                  WACs



                     Excerpts from


          Chapter 388-101
Certified Community Residential Services and
                  Support
   http://apps.leg.wa.gov/WAC/default.aspx?cite=388-101




                           139
        RESOURCES




                 WACs



                   Excerpts from


          Chapter 388-825
            DDD Service Rules
http://apps.leg.wa.gov/WAC/default.aspx?cite=388-825




                        140
   RESOURCES




   Ombudsman Program
   http://www.ltcop.org/WAombudsmenlist.htm

Frequently Asked Questions




                     141
  RESOURCES




Additional Readings




              142

				
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