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BUILDING FAMILY
PARTNERSHIP BY UNDERSTANDING AND SUPPORTING FAMILIES OF CHILDREN WITH
DISABILTY
TABLE
OF CONTENTS
1.
Introduction
2.
Crisis stages experienced by families with an
intellectually disabled member.
3.
Family Stress Factors
4.
Suggestion to families
5.
Suggestions to parents
6.
Parents:
Welcome members of the
school community
7.
Parents schools of excellence
8.
School, family and community partnerships
9.
10 Ways for parents to help teachers
10. Crime victims with disabilities and their
families
INTRODUCTION
Parenting is one of the
difficult jobs that parents come across in the course of their life as they
encounter a multitude of emotions and incidents when rearing their children. It
is one of the most beautiful experiences in the world but sometimes parents are
pestered by extreme feelings of guilt, doubt and incompetence despite being not
in the face of harsh reality. Particularly this feeling is enhanced if child is
born with a disability:
Be it intellectually
impaired, hearing impaired, visually impaired or physically
disabled.
Just as the individual
with disability need support, care, understanding and co operation from the society,
similarly parents also need support, help, guidance, acceptance and cooperation
from all to raise their child in a way which will lead to maximized enhancement
of potentials of the child which will ultimately make him a useful and
contributing member of the society.
Crisis stages experienced by families
with an intellectually disabled member.
The
life of an intellectually disabled person is one that is marked with crisis for
both himself and his family. Powers and Bruey (1988)
in their summary of research findings, outlined four
major crisis stages experienced by families with an intellectually disabled
member. These stages are roughly the pre-school going age; the school going age;
adolescence and adulthood.
Pre-School Going Age
When
a child is first diagnosed as having an intellectual disability, he finds that
many of life's avenues are closed to him. Although this may not be fully realised immediately by his parents or caregivers, many
still experience a grief of sorts - a sense of loss (Hannam, 1988) as if all their dreams and hopes for this
child have come crashing down.
The
initial shock can be buffered by having a supportive environment of relatives
and friends, yet this is not always available for the family. The tendency to
blame each other for the child's disability should also not be yielded to, as it
can be very detrimental to the spousal relationship.
Sometimes the manner in which the
parents were informed of the child's diagnosis can either facilitate acceptance
or rejection. Yes, bringing bad news is not an easy task but doctors and other
health care professionals need to be more informed in this area. Although, there
is no perfect way to break the news, they need to be both comprehensive in the
provision of information and also supportive. Usually, parents would benefit if
a follow-up is done by the doctor or health care professional concerned. Making
an immediate referral to the correct agency to provide further services to the
child would also be very beneficial for both the family and the
child.
Many
parents are anxious to provide their child with early stimulation. This is
necessary to give the child the extra push needed in his already delayed
development. Unfortunately, to be enrolled in such services sometimes seem like
a "luxury". This is because of the scarce resources available for this purpose.
Sadly, if parents cannot afford a private tutor or other therapies for their
child, he would be left to his own devices at home. In this area, organisations serving the intellectually disabled such as
MINDS, can provide consultation and supportive services
to these parents. Such services will enable them to train and cope with their
intellectually disabled child.
Siblings of the intellectually disabled
person experience a certain amount of stress too. Sometimes they may perceive
their parents as being neglectful of their needs. This happens when parents do
not see the problems faced by them as the whole family's problem. Hence, their
efforts to help their disabled child would usually exclude the involvement of
their other children. Professionals working with the families have thus seen the
importance of including siblings in the home training programme (Lobalt and Ricardo,
1988).
School Going
Age
This
marks another period when the parents experience another crisis as they further
realise the impact of their child's disability. In my
ten months at MINDS, there were no less than ten parents who complained that
their children were rejected from the various kindergartens because their
children "looked disable". Of course, there were also
those who were rejected because their hyperactivity was beyond the control of
the kindergarten teachers.
The
impact is further experienced if the child has cousins or friends in the same
age group. Parents will start to realise that their
children may not make it through the first year as successfully as the
others.
If
the child is constantly being compared with other children, he may develop an
unhealthy inferiority complex about himself. Sometimes, because of the pace of
his learning, he is also labelled as "stupid". The
intellectually disabled person may not be able to understand abstract concepts
but he is definitely able to feel.
Very
often the child with an intellectual disability is further disabled by an
overprotective environment. If a child is not made to feel he necessity of
learning or doing things for himself, he will always depend on his caregivers.
Usually, parents who overindulge the intellectually person see their acts as
forms of love. The problem will be heightened once they are old and find
themselves incapable of meeting all the basic needs of their disabled
child.
Adolescence
The
intellectually disabled person is usually viewed as one who does not reach
maturity in all areas of life. As such, parents and professionals may forget
that they do develop sexually. Unlike their non-disabled counterparts, they do
not have the ability to read books to help themselves understand the bodily
changes that take place. So when they begin to express their sexual feelings and
desires, it is usually done inappropriately. Though stories of some masturbating
in public places, touching the genitals of others, etc. are true, these are not
signs of a sex pervert and should not be construed as such, only as feelings
inappropriately expressed.
Parents of intellectually disabled
females often worry about the possibility of their daughters being taken
advantaged of. With the advancement made in the medical field, there are means
to arrest the ovulation process. Some parents resort to ligating their daughters. The present special school
curriculum does not consciously include sex education.
Indeed the sexuality of the
intellectually disabled is a difficult issue to handle for both parents and the
professionals involved. If a child can learn socially acceptable ways to eat,
walk and talk, would not he likewise learn socially acceptable ways to express
his sexuality? The difficulty then does not lie with the intellectually disabled
person but with our attitude towards their sexuality.
If
the person has serious behavioural problems, parents
soon begin to realise that their old methods of
physical restrain will no longer be effective as the child has grown in both
size and strength.
Adulthood
When other parents are preparing
for the marriages of their adult children, parents with anintellectually disabled person once again are faced with
the reality of the person's disability. Marriage is not considered an
alternative for the intellectually disabled person. But what
about encouraging companionship among the intellectually disabled?
Unlike their non-disable peers, many
families with an intellectually disabled member also begin to worry about future
care arrangements. As this would not only affect the future of the
intellectually disabled but also that of the other family members, it would be
wise to plan well ahead. With improved health conditions, the intellectually
disabled person can be expected to live as long as his non-disabled peers.
Hence, parents may need to accept the fact that he may have to lead a life
without them, and alternative forms of accommodation for the future has to be
looked into.
Concluding
Remarks
The
life of an intellectually disabled person is indeed difficult both for himself
and his family. However, such difficulties can be reduced with support and
encouragement from the community at large. Meeting strangers can sometimes be
quite a painful experience, not because they are intrinsically cruel or unkind
but because their embarrassment and sense of inadequacy makes them hold back
from reaching out (Hannam,
1988).
The important thing for everyone to
remember that an intellectually disabled person is a person first, and that
"being retarded is a handicap, not a disgrace" (Irene Jakab).
Family Stress Factors
The
birth of a child with a disability, or the discovery that a child has a
disability, can produce stress among family members. Stress can also be caused
by a number of ongoing factors, or by special circumstances. Siblings need an
explanation for the tensions within the family and the cause of the
tensions.
Some families are stressed by the amount of financial resources
required to meet the needs of the child who has a disability. Some parents may
expect nondisabled siblings to accept the brother or
sister with a disability as "normal." This expectation can lead to internalized
feelings of anxiety and jealousy which the nondisabled
sibling may be reluctant to voice. The parents, in turn, may fail to recognize
the child's unhappiness and may deny that a problem exists.
During an
interview with the Parent Advocacy Coalition for Educational Rights Center, Inc.
(PACER), Beth, a young sibling, offered parents some sage advice:
"I
think... I'd want them to understand that sometimes siblings are going to get
jealous of the extra help and attention that a brother or sister who's
handicapped receives. Parents shouldn't get mad about the jealousy or make the
kids without a handicap feel too guilty about it if sometimes they resent the
extra attention. Parents have to sit down and talk to the brothers and sisters
who are nonhandicapped about what the handicap really
means. Kids don't automatically understand it by themselves"
(Binkard, 1987, p.5).
Nondisabled siblings may feel obligated to compensate for
the child with the disability, to make up for that child's limitations. They may
be acting as a surrogate parent, assuming more responsibility than would be
usual in the care of a nondisabled sibling. On the
other hand, siblings may help the family by providing their parents with
assistance and support, which they otherwise might not have, in the care of the
child with a disability. The nondisabled child may
experience jealousy because he or she may be required to do family chores,
whereas, the sibling with a disability is not required to do them -- despite the
fact that the sibling with a disability may be unable to do them, or would have
great difficulty doing them. The nondisabled sibling
may resent having to integrate the sibling with a disability into the
neighborhood peer group, and may experience or perceive peer rejection because
of having a sibling with a disability. Finally, the nondisabled sibling may feel embarrassment because of a
siblinghysical characteristics or inappropriate
behavior. Essentially, parents, other adult family members, and professionals
should realize that nondisabled siblings need special
understanding, attention, support and recognition of their unique contributions
to the family system (Powell & Ogle, 1985).
Siblings with
disabilities, on the other hand, also experience stress as family members. These
common stresses include frustration at not being able to make themselves
understood; unhappiness at being left to play alone; irritation over constant
reminders about everything; withdrawal because of lack of social skills; low
self-esteem; and anger resulting from an inability to do things as easily and
quickly as their nondisabled brothers and sisters.
Through it all, with understanding and support, there are usually many positive
interactions and normal sibling give-and-take situations from which each learns
and matures.
When parents have a double standard for disabled and nondisabled children, conflicts can arise. Even though the
child with the disability, in fact, may need and receive more parental
attention, the amount given may be perceived as unfair by nondisabled siblings. Some parents, on the other hand, may
tend to overindulge the normal sibling in an effort to compensate for a brother
or sister with a disability. The normal rivalry between all siblings may cause
the nondisabled sibling to perceive incorrectly that
the parents favor or love best the sibling with a disability. Mary expressed the
resentment she feels when her brother is dealt with lightly in comparison to her
punishments:
"Nonhandicapped kids can get pushed
aside when their brothers or sisters have handicaps. Andrew seems to get help
naturally --it's like attention to his needs is "built into the system." I'm the
bad one, but he can do no wrong. He makes all the messes, but I get into trouble
if I don't empty the dishwasher." (Binkard, 1987, p.10)
Suggestions for Families
When planning for the future of the sibling with a
disability, you should consider such things as mobility, social and
communication skills, education, and the individual's own ideas about where to
live and work. Even after careful planning and the appointment of a guardian or
co-guardians, plans should be made for emergencies. A file should be kept in a
safe place, known to all family members. The following ideas should be addressed
when making future plans and the information should be included in this
accessible file:
1. Develop financial plans for
future care. If the family is considering establishing a trust for the family
member with the disability, it should consider the incomes of the children in
the family, including the sibling with a disability. Make a will only with an
attorney experienced in devising wills for those who have an heir with a
disability. Inheritances must be treated with caution. It is especially
important to investigate the continued eligibility for certain social services
if assets from an estate, pension, or life insurance are left to the child with
a disability.
2. Know your state's laws regarding guardianship and
independence. Do not assume that you as parents will automatically remain your
child's guardian when he or she reaches the age of majority in your state.
Establish whether the sibling with a disability requires no, partial, or full
guardianship. This information should be in writing, and, if possible, make
contingency plans in case the first-choice guardian is unable to assume that
role. Be aware of the consequences in your state of not having a guardian
appointed.
3. Nondisabled siblings should know
where to access the needed educational, vocational, and medical records of the
disabled sibling, and be ready to anticipate his or her changing future
needs.
4. Families should consider the future health of the sibling with
a disability with respect to needed services and care. Parents should document
where he or she can receive medical care and the financial resources and
arrangements necessary for this care.
5. Families should gain an
understanding of the legal and eligibility requirements of programs available to
the family member with a disability. Investigate resources through government
programs, such as Supplemental Security Income (SSI), Vocational Rehabilitation,
6. Families should discover the types of community
resources available. The range of services and resources varies considerably
according to place of residence. Keep abreast of any changes in the availability
of these services. Consider the sibling's need for long-term care, as well as
for employment and companionship.
7. Be aware
that, as families grow and develop, the members within it change. Living with
and caring for a child with a disability is different from living with and
caring for an adult with a disability. Family members should continually ask
themselves the following questions:
- What are the needs of the sibling
with a disability?
- How will these needs change?
- What can be expected
from local support groups in the community?
- What is and will be my level
of involvement?
- Is the involvement financially, emotionally and
psychologically realistic for me?
- How will the responsibility be shared
with other family members?
- Are my career plans compatible with my
responsibilities for my brother or sister with a disability?
- Will my
future spouse accept my brother or sister?
The care of a sibling with a
disability or chronic illness is, in large part, a family affair and a
responsibility that should be shared as evenly as possible. By planning
effectively for the future, parents can help ease the responsibility and the
feelings of stress that uncertainty about the future can bring.
Suggestions to Parents
Parents
set the tone for sibling interactions and attitudes by example and by direct
communications. In any family, children should be treated fairly and valued as
individuals, praised as well as disciplined, and each child should have special
times with parents. Thus, parents should periodically assess the home situation.
Although important goals for a child with special needs are to develop feelings
of self-worth and self-trust, to become as independent as possible, to develop
trust in others, and to develop to the fullest of his or her abilities, these
goals are also important to nondisabled siblings.
To every extent possible, parents should require their children with
disabilities to do as much as possible for themselves. Families should provide
every opportunity for a normal family life by doing things together, such as
cleaning the house or yard; or going on family outings to the movies, the
playground, museums, or restaurants. Always, the child with the disability
should be allowed to participate as much as possible in family chores, and
should have specific chores assigned as do the other children.
Caregiving responsibilities for the child with a disability
or chronic illness should be shared by all family members. It is especially
important that the burden for caregiving does not fall
onto the shoulders of an older sibling. If there is an older sister, there is a
tendency in some families to give her the primary responsibility, or an
excessive amount of it. Today, however, more communities are providing resources
to ease the family's caregiving burdens. Examples
include recreation activities, respite care, and parent support
groups.
Powell and Ogle (1985) present several strategies suggested by nondisabled siblings themselves for parents to consider in
their interactions with their nondisabled children.
These siblings suggest that parents should:
- Be open and honest.
-
Limit the caregiving responsibilities of siblings.
- Use respite care and other supportive services.
- Accept the
disability.
- Schedule special time with the nondisabled sibling.
- Let siblings settle their own
differences.
- Welcome other children and friends into the home.
-
Praise all siblings.
- Recognize that they are the most important, most
powerful teachers of their children.
- Listen to siblings.
- Involve all
siblings in family events and decisions.
- Require the disabled child to do
as much for himself or herself as possible.
-
Recognize each child's unique qualities and family contribution.
- Recognize
special stress times for siblings and plan to minimize negative effects.
-
Use professionals when indicated to help siblings.
- Teach siblings to
interact.
- Provide opportunities for a normal family life and normal family
activities.
- Join sibling-related organizations.
Children
with special needs, disabilities, or chronic illness may often need more help
and require more attention and planning from their parents and others in order
to achieve their maximum independence. Brothers and sisters can give parents
some of the extra help and support they need; the special relationship of
brothers and sisters, disabled and nondisabled, is
often lifelong. This special and unique bond among siblings can foster and
encourage the positive growth of the entire family
Parents:
Welcomed Members of the School Community
The
Sign on the Door
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"All Visitors
Must Report to the Schoolffice" |
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The
Sign on the Door should be
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"Welcome to our
school! |
Signs
with this message are present at every elementary school across
Many principals make it a point to tell parents that they are
a child's first teacher. We try to do this at every opportunity: newsletters,
parent meetings, and student functions. In doing this, it is our hope that the
parents will feel more welcome to be a part of our schools and hopefully be more
willing to donate their time to aid in the success of our students. But do the
parents truly feel welcomed as contributors to their school community? How do we
know?
Attempts are made to communicate our belief that we welcome
parents, but unless we are truly willing to involve the parents in ways that
show our commitment to their role in their children's education, the level of
parent involvement will not be high. Section 1118 of the "No Child Left Behind"
law makes an emphatic statement to schools receiving Title I funds in saying
that these schools must "develop jointly with, agree on with, and distribute to,
parents of participating children a written parent involvement plan."
Whether in response to the law, or not, a written parent involvement
policy is needed if we are to truly mean what we say when we tell parents that
they are the child's first teacher. Below are five strategies that I believe are
necessary for elementary principals to consider as they reflect on proper policy
and best practice for including parents in the educational
process.
Work closely with parent/teacher
organizations.
Of course, we can
never underestimate the power of strong parent/teacher organizations such as
PTAs. The parents who head these organizations typically have a firm grasp of
what goes on in the school community. They can also be relied on to provide
schools with a list of parent volunteers and other information relative to
parent involvement. It is important for principals to include them, as much as
possible
Parent Schools of
Excellence
The National Parent Teacher Association has developed a
Parent
Involvement Schools of Excellence Certification, which recognizes schools
whose parent involvement programs are based on the National
Standards for Parent/Family Involvement Programs. The standards, already
endorsed by nearly 100 health and education organizations, were created around
the six types of parent involvement identified by Joyce L. Epstein, Ph.D. at
Schools that choose to use the following six types of parent
involvement not only improve their overall perception by parents as a school
partner, but also take great strides in complying with the "No Child Left Behind Law" parent involvement section. The six types of
standards are:
Standard I: Communicating
– Communication between home and school is regular,
two-way, and meaningful
Standard II:
Parenting
– Parenting skills are
promoted and supported
Standard III: Student
Learning
– Parents play an integral
role in student learning
Standard IV: Volunteering
– Parents are welcome in
the school, and their support and assistance is sought
Standard
V: School Decision Making and
Advocacy
– Parents are full partners in
the decisions that affect children and families
Standard VI:
Collaborating with
Community
– Community resources are
used to strengthen schools, families, and student learning
School, Family,
and Community Partnerships: Preparing Educators and
Improving
A
parent–teacher conference is a time when important people in a student's life
can talk about how that student is doing in school. It's a chance for you to ask
questions about the class or your child's progress. It is also a time for you
and the teacher to work together as a team to discuss ways you both can help
your son or daughter.
Whether
your child is in elementary, middle, or secondary school, parent-teacher
conferences are important. If your school does not schedule regular conferences,
you can request them.
Teachers
need your help to do a first-class job. Together, you can help your child have a
great school year.
Before
the conference
In
preparation, talk to your child about the conference, and most importantly,
write down questions you would like to pose to the teacher.
Schedule
an appointment—A parent-teacher conference is not the only time when parents
and teachers should make contact. Parents may want to schedule a special meeting
with their child's teacher for a variety of reasons. If you need to set up an
appointment with the teacher, make a phone call or write a quick note to the
teacher, and let him or her know if you have particular issues you would like to
discuss.
Talk
to your child—Find
out which subjects your child likes the best and the least. Ask why. Also, ask
if there is anything your child would like you to talk about with the teacher.
Help the child understand that you and the teacher are meeting to help him or
her. If your child is in middle or high school, you may want to include him or
her in the conference.
Gather
input from others—If your spouse, another care-giving adult, or someone with
pertinent information or insight (doctor, counselor, other guardian) can't
attend the conference, ask for that person's concerns and questions before the
conference.
Make
a list—Before you go to the meeting, make a list of topics to
discuss with the teacher. Along with questions about academics and behavior, you
may want to talk to the teacher about the child's home life, personality,
concerns, habits and hobbies, and other topics that may help the teacher in
working with the child (e.g., religious holidays, music lessons, part-time jobs,
a sick relative).
During
the conference
The
conference is an opportunity to exchange information with the teacher and
develop ways to cooperate in educating your child.
Establish
rapport—As an icebreaker, take notice of something that reflects well
upon the teacher. For example, thank the teacher for having made thoughtful
notes on your child's homework or for the special attention in helping your
child learn to multiply.
Ask
questions—The questions
you ask during the conference can help you express your hopes for the
student's success in class and for the teacher. It's a good idea to ask the
important questions first, in case time runs out. The teacher's answers should
help you both work together to help your child.
If
your child receives special services (e.g., gifted and talented programs, speech
or occupational therapy), be sure to ask about the frequency of services and
your child's progress.
Addressing
problems—Parent-teacher
conferences are a good time to discuss any difficulties (either academic or
behavioral) a child might be having at school. When problems arise, parents will
want to
Develop
an action plan—If the student needs help with a behavioral or an academic
issue, you and the teacher should agree on specific plans—that you both will
work on—to help your child do better. Be sure you understand what the teacher
suggests. If it's not clear, ask him or her to explain. Set up a way to check on
your child's progress. You and the teacher can decide how best to stay in touch,
such as through phone calls, notes, or additional meetings.
Ending
the conference—End
the conference by reviewing what you discussed and restating your action plan.
This is also a good time to set up your next meeting.
After the
conference
Once
the conference is over, you should follow up with your child as well as the
teacher
When
discussing the conference with the child afterward, stress the good things that
were covered and be direct about problems that were identified. If an action
plan is in place, explain to the child what was arranged. When an action plan is
in place, consider the following:
A
good way to promote a continuing relationship with the teacher is to say
"thank-you" with a note or a telephone call. Continuing to keep in touch with
the teacher, even if things are going well, can play an important role in
helping the child do better in school. When a child
knows parents and teachers are regularly working together, the child will see
that education is a high priority requiring commitment and
effort
10 Ways for
Parents to Help Teachers
Many
teachers have written to me over the years, frustrated with how unprepared their
students are—and they don't mean academically. Chris, a kindergarten teacher,
wrote what many teachers have expressed, "I would love it if you could write a
10 tips for parents to help us teachers do our increasingly demanding job. Many
parents of children I teach have left the job of spiritual, character, and
social/emotional education to me. I can't do it all in addition to teaching
academic skills. I'm getting burned out and pretty soon won't have the energy
left to nourish one child let alone 25.
1. Create a smooth takeoff each
day.
Give your child a hug before she ventures out the door and you head to work.
Look her in the eye, and tell her how proud you are of her. Your child's
self-confidence and security will help her do well both in school and in
life.
2.
Prepare for a happy landing at the end of the day when you reconvene.
Create a predictable ritual such as 10–20 minutes listening to your child talk
about his day—before you check phone messages, read the mail, or begin dinner.
That way you are fully present to listen, and your child has a touchstone he can
count on between school and home.
3.
Fill your child's lunchbox with healthy snacks and lunches. Have dinner at a
reasonable hour and a healthy breakfast. A well-balanced diet maximizes your
child's learning potential.
4.
Include calm, peaceful times in your children's afternoons and evenings.
Maintain a schedule that allows them to go to school rested, and if they are
sick, have a system in place so they are able to stay home.
5.
Remember it's your children's homework, not yours. Create a specific
homework space that's clutter-free and quiet. Encourage editing and
double-checking work, but allow your kids to make mistakes, as it's the only way
teachers can gauge if they understand the material. It's also how children learn
responsibility for the quality of their work.
6.
Fill your child's life with a love for learning by showing him your own
curiosity, respecting his questions, and encouraging his
efforts.
7.
Fill your home with books to read, books simply to look at, and books that
provide answers to life's many questions. The public or school library is an
excellent resource.
8.
Be a partner with your child's teacher. When you need to speak to him or
her in reference to a specific issue with your child, do it privately, not in
front of your child. Make a point never to criticize your child's teacher in
front of your child.
9.
Set up a system where routine items are easily located—such as backpacks,
shoes, signed notices. Create a central calendar for upcoming events to
avoid the unexpected.
10. Tuck a "love note" in your child's lunch bag
to let her know how special she is. Knowing they are loved makes it easier
for children to be kind to others.
Crime victims
with disabilities and their families
This Bulletin is a product of the Symposium on
Working with Crime Victims with Disabilities, funded by the Office for
Victims of Crime (OVC) and coordinated by the National Organization for Victim
Assistance (NOVA), on
Historically, all victims of crime have been denied full
participation in the criminal justice process. Crime victims with disabilities
and their families are even less likely to reap the benefits of the criminal
justice system. Disability advocates report that crimes against people with
disabilities are often not reported to police. Of those that lead to an
investigation and an arrest, very few are prosecuted. When going through the
criminal justice process, few victims with disabilities come into contact with a
crime victim advocate. Often when victim services are provided, they may be
inappropriate due to inadequate training of victim service providers.
The following are statistics revealed by some studies. For
example, research has found that 68 percent to 83 percent of women with
developmental disabilities will be sexually assaulted in their lifetime, which
represents a 50 percent higher rate than the rest of the population.3
People with developmental disabilities are more likely to be re-victimized by
the same person and more than half never seek assistance from legal or treatment
services (Pease & Frantz, 1994). It is not just individuals with
developmental disabilities who
suffer very high rates of victimization. A study of psychiatric
inpatients found that 81 per-cent had been physically
or sexually assaulted.4 The Colorado Department of Health estimates
that upward of 85 percent of women with disabilities are victims of domestic
abuse, in comparison with, on average, 25 to 50 percent of the general
population.5
As with crime and crime victims, underreporting of crimes
perpetrated against people with disabilities is a major problem. Currently there
is no authoritative research that details how many individuals with a disability
become crime victims or how many people become disabled by criminal attacks. Nor
has the victim assistance field adequately identified the best practices for
serving victims with unique needs or how to train criminal justice system
personnel - including victim specialists - to make services truly accessible to
all crime victims.
Limited information exists regarding the criminal
victimization of people with disabilities, but the little that is available is
horrifying in nature and scope. Joan Petersilia,
Researcher and Professor of Criminology at the University of California, Irvine,
stated that persons with developmental disabilities have a 4 to 10 times higher
risk of becoming crime victims than persons without a disability, in her Report
to the California Senate Public Safety Committee hearings on "Persons with
Developmental Disabilities in the Criminal Justice System." In addition, she
says, "Children with any kind of disability are more than twice as likely as
nondisabled children to be physically abused and
almost twice as likely to be sexually abused." Others in the crime victims field
recount anecdotal experiences from their work that illustrate that crimes
against people with disabilities are often extremely violent and calculatedly
intended to injure, control, and humiliate the victim.
This Bulletin highlights the main discussion points
and recommendations developed by the Symposium participants
and seeks to encourage victim assistance program staff to take the
necessary steps to better serve crime victims with disabilities in their
communities.
Obstacles Unique to the Disability Community
Some of the numerous social and legal problems faced by
people with disabilities can be summarized as follows:
Isolation
Our society often segregates persons with disabilities
through physical and social isolation, with institutionalization representing
the extreme. As a result of pervasive isolation, people with disabilities may
not learn about available services and resources nor are they routinely informed
of rights they have by law. This is particularly true for people with more
severe disabling conditions, older people with disabilities, and younger people
with developmental disabilities. Indeed, many people who are chronically
victimized do not even know that society condemns such predatory conduct and has
tools to end and redress that wrong.
Limited Access
Physical Accessibility: In many instances, crime victims with disabilities do not
have physical access to services. Architectural barriers in buildings and public
transportation systems mean that many crime victims with disabilities cannot
visit criminal justice agencies or victim assistance programs. The Americans
with Disabilities Act of 1990 (ADA) addresses key issues of accessibility, but
as Symposium participants pointed out, there is an extensive lack of
understanding of how Titles II and III of the ADA pertain to the criminal
justice and victim assistance fields. Moreover, this lack of understanding is
frequently coupled with a fear that making services accessible to crime victims
with disabilities will require expensive, disruptive adaptations.
Attitudinal Accessibility: Attitudes to-ward the person with a disability is as important or more so than physical accessibility. In addition
to accessible physical environments, program staff must be welcoming toward
people with disabilities and show in their de-meanor
and in the quality of their pro-grams that they sincerely want to work
collaboratively to serve the community.
Underreporting of the Crime
Underreporting of crime is a pervasive problem that the
victim assistance field is addressing on many fronts. For example, the Rape,
Abuse, and Incest National Network (RAINN) estimates that 1,000 rapes occur
every day in the
Limited Advocacy
Despite progress by disability rights activists, advocacy
on their own behalf is still limited. Again, just as with many crime victims, a
person who wants to access criminal justice decision making processes is unable
to do so without adequate tools to enable full
participation.
Myths
The following three myths contribute to stereotyping which
often results in discrimination against people with disabilities:
The first myth is
the perception that people with disabilities are "suffering." Rather than
extending legal rights and protections, as with other oppressed groups, a
societal response prior to passage of the
The second myth
is that people with disabilities lack the ability to make choices or determine
for themselves what is best for them in all spheres of life (physical, mental,
emotional, spiritual, political, sexual, and financial). Although individuals
with severe cognitive impairments may need greater support and advocacy
services, this does not impede their ability or preclude their right to
participate actively in decisions affecting their lives.
The third myth, according to crime victim advocates, is that many people in
society fear contact with crime victims generally, as though their distresses
are contagious. An even stronger stigma attaches to people with disabilities.
Our society is not socialized to integrate differences in abilities as a part of
our perception of "normality." The cultural norms for functioning include good
hearing and vision, physical independence and mobility, mental alertness, the
ability to communicate primarily through the written and spoken word, and
physical attractiveness. Deviations from those norms tend to frighten those in
the "able-bodied majority" who define the concept of normal abilities. When the
two forces of stigma are joined victimization and disability attitudinal
barriers to providing healing and justice can seem even more
formidable.
Until recently, the crime victims
movement has not worked systematically to identify issues and challenges
involved in responding more effectively to victims with disabilities. Improving
service delivery to people with disabilities must become a priority because the
crime victims' rights movement is founded on the premise that every crime victim
deserves fundamental justice and comprehensive, quality services. A primary
difference for a person with a disability who becomes a crime victim, however,
is that the criminal victimization frequently compounds existing problems caused
by a lack of accessibility to basic social services, poverty,
institutionalization, and other barriers to equal rights. A crime that would be
damaging to an able-bodied person is frequently a devastating blow to a person
with a disability. Indeed, for many, it is the criminal assault itself that
results in a disability, when major life functions the ability to move, to
communicate, to understand are disrupted temporarily or
permanently.
Many people with disabling conditions are especially
vulnerable to victimization because of their real or perceived inability to
fight or flee, or to notify others and testify about the victimization.
Frequently, because a person with a disability may be more physically frail, the
victimization may exacerbate existing health or mental health problems. For
those who hope that their disability may "protect" them from criminal
victimization, it is shocking to learn that many criminals do not act upon a
perceived "desirability" of the intended victim. Indeed, many perpetrators may
be unaware that their victims have a disability. Here, the victim is truly
random another one of us in the wrong place at the wrong time; although that
victim's ability to frustrate the criminal's intent may be less than a person's
without a disability.
Another reality is that many offenders are motivated by a
desire to obtain control over the victim and measure their potential prey for
vulnerabilities. Many people with disabilities, because they are perceived as
unable to physically defend themselves, or identify the attacker, or call for
help, are perfect targets for such offenders. People with disabilities are also
vulnerable to abuse by the very professionals and other caregivers who provide
them with services. Just as many pedophiles gravitate to youth-serving
occupations, so do many other predators seek work as caregivers to people with
disabilities. Indeed, in one survey, virtually half 48.1 percent of the
perpetrators of sexual abuse against people with disabilities had gained access
to their victims through disability services.2
People who are victimized are vulnerable to exacerbated
suffering. Most victims will experience a sense of shock, disbelief, or denial
that the crime occurred, often followed by cataclysmic emotions: fear, anger,
confusion, guilt, humiliation and grief, among others. But people with
disabilities may have intensified reactions because they may already feel
stigmatized and often have low self-esteem due to societal attitudes. The sense
of self-blame, confusion, vulnerability, and loss of trust may be exaggerated,
as may be an ambivalence or negativity related to their perception of their
bodies. Denial and avoidance of the need to cope with the aftermath may
complicate the identification of crime victims with a disability. Some victims,
particularly elderly and those with developmental disabilities, will need
services designed to enhance a feeling of safety and security regarding future
victimization
CONCLUSION
Our world has serious challenges. We must
face them with honesty, analyze, learn from the past, then move forward. The need for change is not negotiable. We
must strengthen our capacity and learn to live with differences and conflict
while avoiding the tendency to slide into violence as a solution. Conflict is
legitimate. We can agree to disagree. Resorting to violence is no longer viable.
It will be our destruction.
We must make tough decisions and be
willing to work hard. Teenage suicide, random violence, drive by shootings and
gangs are simply signals of a deep social malaise that won't be cured by
microwave thinking or slick packaged answers. We must think deeply. The values
are clear for both individual with disability and his or her
family
v
Cooperation, not competition
v
Participation, not coercion
v
Relationships, not isolation
v
Interdependence, not independence
and
v
Friendships and not loneliness.
11.