CHAPTER ONE

 BUILDING PARTNERSHIPS AND ADVOCACY

---

Introduction

The purpose of Chapter One is to provide parents with information to work effectively with their child's educational team.  Under the Individuals with Disabilities Education Act (IDEA), parents are guaranteed the right to be full and equal participants in their child's educational program.  Parents who utilize the knowledge they have regarding their child's abilities and disability develop advocacy skills enabling them to work with the educational system.  They are then more effective in assuring an appropriate program for their child.  Parents must not only be knowledgeable of the special education laws, but also be effective communicators.  Parents need to present their concerns in a constructive manner.  In addition, the ability to demonstrate appropriate assertiveness is another necessary tool to become a partner in your child's education.  Finally, parents have an important role in passing their advocacy skills on to their children.  

Top of page

---

DEVELOPING A VISION OF ADVOCACY

1. I believe that I am the expert regarding my child.
2. I recognize that I am the constant in my child's life.
3. I perceive myself as an active agent responsible for change.
4. I expect people to view my child with a disability as a child first with the same basic needs as any other child.
5. I recognize and promote my child's abilities, talents and interests.
6. I believe a person with a disability is a valued and contributing member of the family, their community and society.
7. I have high expectations for my child and believe my child has the capacity to learn and achieve inclusive services and full membership in society.

Top of page

---

PARENTING YOUR CHILDREN

Raising a child with a disability or special emotional or health care needs is a journey filled with personal and parental challenges.  We acknowledge that all parents deal with the emotions and issues of parenting a child with special needs in their own way.  The process is different for everyone.  As your child with special needs grows, you and your family members grow, too.  Our goal for this manual is to provide you with a source of information.  You may find, as described below, that there will be times you will seek to get as much information as you can, while at other times, you will feel you are not able to or it may not be a priority.  It is our hope that you will continue to use this manual as a resource to help guide you, as you become an advocate for your child.

After four years of observing and participating in the lives of four mothers of children with special needs, Nancy Miller, author of Nobody's Perfect - Living and Growing with Children Who Have Special Needs began to see that a specific pattern emerged.  She labeled these patterns as "stages of adaptation" and identified the stages as: Surviving, Searching, Settling In, and Separating.  They occur in that general order, although instead of occurring one at a time, one after another, they co-exist as a background framework, with one or more stages activated as a temporary "state" in the foreground at any given time. 

The stages have a circular, dynamic quality.  They may overlap and re-ignite feelings you had in a previous stage.  Following are descriptions of these four stages:

1.  Surviving
The first stage entails what you do to keep going when you are feeling completely helpless because something totally out of your control has taken away your child's equal chance at life.  It may last a week or years.  You may feel fear, confusion, guilt, blame, shame, and anger.  It is important to understand that the feelings you have are normal.  You pass through this period in your own way, in your own time.  Many feel they have reached a turning point when they experience a sense of control, optimism, and hope.

2.  Searching
You will go through periods of Searching your whole life with your child.  There are two kinds of Searching - Outer Searching and Inner Searching.  Outer Searching begins with you asking, "What's wrong?" and "Can it be fixed?" Inner Searching begins when you ask the first questions of a different nature: "Why?" and "What does this mean for my life, my relationships, and my other children?" It is the quest for understanding, becoming aware of society's attitudes about people with disabilities, watching your priorities shift, and your life plan change.  For some parents, the Inner Search does not involve major self-questioning; for others, the process may be long and complex and may result in major changes in life direction and philosophy.

3.  Settling In
During this stage, your Outer Searching becomes less time consuming.  You choose your battles and balance your child's schedule and your family life.  Not only has your Outer Search subsided for a while but, more important, your attitude about it settles down.  The frantic pace lets up.  You realize that change takes time and that you are dealing with a lifelong process.  You have learned new skills and information, become more confident and assertive, and you may have built up a network of resources and support.

4.  Separating
At some point, Separating comes into focus as the next major life stage.  Separating is a gradual normal process that occurs in tiny stages throughout childhood.  A child with special needs may take longer to become more independent and self-sufficient.  As all parents, we must allow the process of letting go to occur.  You may have to initiate separation, plan it, find it, and make it happen as your child grows older.  Separating re-evokes feelings you had during Surviving - guilt, grieving, and psychological turmoil.  When your son or daughter leaves home or separates in whatever way is appropriate for him or her, you may again become Settled In, involved in your child's life in new ways.  And life moves on.

Excerpted from Nobody's Perfect - Living and Growing with Children Who Have Special Needs, Nancy B. Miller, Ph.D., M.S.W. Baltimore, MD: Paul H. Brookes Publishing Co. (1994).

Madison Brown, age 4

Top of page

---

GREAT EXPECTATIONS

Families like ours, with a child who has a disability, often get so involved in routines that we neglect to allow ourselves the time to dream about future goals.  As parents, we need to believe that we have some control over the future, and that our children will be allowed the choices and fulfillment that people without disabilities have.  Positive experiences that our children have in life will enable them to be valued and contributing members of our communities.  Through these life experiences we can refine and revise our vision based upon the emerging strengths our children display.

Have you ever wondered what "Great Expectations" means to families like yours, those with a son or daughter with a disability?  What does it mean to have "Great Expectations" for your son or daughter with a disability?  For your family?  For professionals who often urge family members to "accept reality"?  For each and every one of us in the community?  We have wondered, and we have some ideas that we would like to share.

Great Expectations are for everyone.  All of us have dreams, visions, and anticipations for the future.  Most of us go out into the world, get feedback from it, and alter our dreams, visions, and anticipations.  Like everyone else, people with disabilities and their families have Great Expectations; like everyone else, they too need help to be able to have their expectations come true.  They need to believe in their own strengths, assume control over their son or daughter's future, and anticipate a future with choices and fulfillment.  But professionals and other people without disabilities also need to have Great Expectations for people with disabilities.

Great Expectations combine four qualities:

* Visions
* Hope
* Determination
* Revision

Visions are the myriad of possibilities that families, friends, associates, and people with disabilities see for themselves and for all members of the community.

What are your visions for yourself?  For your child with a disability and your neighbors, colleagues, and other fellow citizens in your community?  What can you do to nurture and develop your visions, and share them with others?

Hope for the future gives rise to visions.  Hope is an essential part of Great Expectations.  In the past, life-long institutionalization was the only choice for many families.  At the present time, families have the choice of supervised apartments, small group homes, independent living, sheltered workshops, post-secondary education, and supported employment as the residences and workplaces for their sons and daughters.

What are your hopes for yourself?  For your family?  For your community?  What are you doing to make that hope a reality?

Determination is a must to achieve Great Expectations.  It is hard to have hope for the future while living in the present or to be accepted for doing so.  Achievements do not just happen; they take a lot of hard work.

What are you determined to do for yourself?  For your child with a disability?  For others in the community?

Revisions of Great Expectations are normal.  They come from feedback that the world gives us.  There is a saying that "Experience makes good judgment.  Mistakes make good experience."  All of us make mistakes, but all of us also surprise ourselves and others by what we accomplish.  We react in different ways to our experiences.  Working with others - professionals, neighbors, coworkers, family, and friends - can change our expectations, strategies, and choices.

What kind of revisions have you made in your plans for yourself?  For your child with a disability?  For your life in the community?

Resources and services are another aspect of Great Expectations - visions and dreams are not enough.  Currently it costs about $100,000 annually to care for a person with disabilities who lives in an institution.  Families who care for their child with disabilities at home want and deserve a reallocation of resources from institutions to communities, services that combine professional support with more informal support, and movement from facility-based endeavors to community-integrated ones.  Instead of urging families to "accept reality" professionals should help families expand reality to make their dreams and visions possibilities.

Great Expectations, with resources to help them occur, create real benefits for communities.  Benefits to communities are real.  Every person with a disability who is employed becomes a taxpayer.  Persons with a disability who volunteer time to a community program give more than their time - they give of themselves.  These particular achievements benefit the person with a disability, the family, and the community.

Achievement and independence are the cornerstones of Great Expectations.  Great Expectations include feeling control over one's life, a feeling of meaning in one's life, and a sense of one's own value.  Research by Shelley Taylor provides a theoretical backbone for these concepts.  But these feelings are universal, as noted by one parent:

I am the parent of three sons.  The youngest is a child with blindness and chronic illness.  My vision is no different from that of other parents.  I want my child to be happy, productive, loved, in love, and accepted.

Finally, Great Expectations entail mixed emotions from families.  Family members may be anxious or confused about the future: they may feel unsure.  They may be disappointed when their Great Expectations do not materialize.  Society's attitude towards people with disabilities can create mixed emotions.  Brothers and sisters also experience the mixed emotions that accompany Great Expectations for people with disabilities.

Visions... Dreams... Great Expectations.  The challenge faces all of us.  The rewards are there for all of us.  But only if all of us have Great Expectations for each other, especially for people with disabilities and their families.  After all, Great Expectations are for everyone.

Stop for a moment and write down your Great Expectations for your child and family.  What is your vision for your child at age 21?  For your family?

Excerpt from: Beach Center on Families and Disability, Families and Disability Newsletter, Volume 2, Number 1, Spring 1990.

Top of page

---

PERSON-CENTERED PLANNING

Formerly services were planned around what bureaucracies could provide people with disabilities.  Slowly we are changing who has the power to plan.  Person-Centered Planning revolves around an individual with disabilities who is the "focus person."  By listening carefully to the dreams, desires, visions and hopes for their future, one can begin to identify ways in which opportunities can be created to fulfill the person's dream.  This process is a way of looking for all gifts, talents and capacities in an individual through a circle of support.  The circle of support consists of people who make the commitment to journey with the individual, ensuring that his/her dreams come true.

Person-Centered Planning begins with a series of MAPS (McGill Action Planning System).  These are visual flip charts that highlight the many facets of a person's life.  There is a history MAP, a relationship MAP, a dreams and nightmares MAP, a medical MAP, a short term goals MAP, and a far more visionary future focused MAP.  There can be others but that is decided as the process gets underway.  The reason for such graphics is that many people with disabilities have difficulty reading; the MAPs are very picturesque and colorful.  The focus person selects the people whom they would like to be a part of their circle, and each person makes a commitment to provide a variety of supports and opportunities.

This process allows for linkages to communities, friendships to be fostered, religious connections to be increased, and employment prospects to be heightened.  It changes the way we traditionally have supported people with disabilities.  We are moving away from the belief that there is something wrong with the individual, something that constantly has to be addressed and "fixed," to believing that anything is possible.  It is a question of understanding what supports are necessary and how opportunities can be created to realize their dreams.

How Do We Describe People?

Person-Centered Planning challenges us to value each person as unique, filled with gifts, talents and possibilities, to find ways to discover our common experience, and work together to build a life where these gifts can be shared with others.

Who Makes the Decisions?  Who is in Control?

Person-Centered change challenges us to learn together with people how to solve problems over time to make meaningful change happen.

From System-Centered		Toward Person-Centered
Professionals in control; Professionals know best		Shared decisions with person, family, and friends
Delegate work to direct service workers		Empower direct service workers to make good decisions
Rely on standardized interdisciplinary teams to generate plans		Create Person-Centered teams to solve problems over time
Organize efforts in conference rooms for convenience of professionals		Organize efforts in community to include person, family, and direct service workers
Take action to follow rules and regulations		Reflect together as basis for setting priorities
Spend lots of time planning with little time to take action		Spend lots of time taking action, with regular times to reflect
Respond to need based on job descriptions		Respond to people based on shared responsibility and personal commitment
Create distance through process		Share struggle by working together

Top of page

---

UNDERSTANDING YOUR CHILD'S ABILITIES AND DISABILITY

There is growing evidence that children grow and learn best when the focus for instruction and intervention is on their strengths, abilities, and interests.  However, as a parent of a child with disabilities, it is also important for you to be knowledgeable about the nature of your child's disability.  Our philosophy at SPAN is that you are the expert regarding your child and the constant in your child's life.  When you become informed regarding your child's abilities and disability, you will be a better advocate for your child.  The following list includes ways to obtain this knowledge:

1. List your child's abilities, skills and talents.  What is it about your child that gives you joy? (See Multiple Intelligences in Appendix B and Positive Student Profile in Appendix C.)

2. Read current books, articles, journals related to your child's disability.

3. Attend lectures and conferences.

4. Be aware of local, state and non-profit service providers.

5. Become involved in a local parent group for the purpose of support, information sharing, and confidence building.  In addition, get involved in your PTA and school-level management or advisory teams.

6. Join national and state disability-specific organizations and relevant advocacy groups or agencies.  (See Appendix J for a list of organizations.)

Through networking with other parents and supporting professionals, you can gain valuable information that will help you with day-to-day problem solving and long-range planning.

SPAN has many resources related to individual disabilities and information regarding national disability-specific organizations.  Your search can often begin with a call to our office at 1-800-654-SPAN or (973) 642-8100.

Yonina Cohen, age 7

Top of page

---

BUILDING PARTNERSHIPS / COLLABORATIVE TEAMING

The intent of the Individuals with Disabilities Act (IDEA), the federal law guaranteeing a free appropriate public education to each child with a disability, is to enable parents to participate as equal partners in the development of their child's educational program.  A collaborative team consisting of both parents and professionals is essential to better define the needs of the child.  The guidelines below will help you build this foundation.

1. Recognize that parents and professionals have areas of knowledge and skills to contribute to the joint task of working together for the benefit of the child.

2. Encourage mutual respect.

3. Establish a working relationship with your child's educators.

4. Promote a sense of joint responsibility.

5. Develop honest, direct, and clear communication.

6. Maintain an open exchange of information.

7. Support shared planning and decision-making.

The Collaborative Team Process

A collaborative team requires effective parent/professional communication, which has been shown to result in improved educational programming for students.  Both parties bring important information to the relationship.  Professionals bring specialized training, knowledge and experience; parents provide keen insight based on firsthand intimate knowledge of the child.  

The collaborative team is a group of people who:

* Work together to achieve at least one common goal  
* Believe that all team members have unique and needed expertise  
* Demonstrate parity by participating as teacher and learner, consultant and consultee  
* Distribute leadership of function among all members of the group  
* Use a collaborative teaming process.

Benefits of Collaborative Teams

* Increased ownership and commitment to goals  
* More successful implementation of planned interventions  
* Shared knowledge and expertise  
* Increased cohesiveness and willingness to work together on future projects  
* Increased evidence of "process gain"- generating new ideas through group interaction not generated through individual work

When developing a team, three questions need to be answered:

1. Who has the expertise needed by the team?

2. Who is affected by the decision?

3. Who has an interest in participating?  

Top of page

---

WHY DO PARENT / PROFESSIONAL PARTNERSHIPS TAKE SO MUCH WORK?

This article reminds us that parents have equal status as part of the collaborative planning team for their children and must work on learning negotiation skills to resolve conflict.

What is a partnership?  It is hard to work toward something you can't define.  The dictionary defines a partnership as "a relationship between two people in which each has equal status and a certain independence, but also has obligations to the other."  There are some interesting words and concepts in this definition.

The first and most often discussed concept in this definition is "equal."  Partners are supposed to be equal.  It does not mean they have equal knowledge in all areas.  It does not mean they have an equal amount of education.  It means that each has equal status.  

We must:

1. Think of ourselves as equal and believe that our knowledge and opinions are valuable;

2. Learn to communicate assertively and express opinions directly while respecting others;

3. Realize that anger over past wrongs keeps us from equal communication; and

4. Understand that being aggressive and not willing to see the professional person's point of view can make partnerships impossible.

Threatening due process with every disagreement instead of learning negotiation skills or going to the principal or program director without first trying to solve the problem with the teacher does not create an atmosphere for positive working relationships.  Our power as parents is real and is designed to protect the interests of our children.  It should not be used to intimidate.

Professionals can also build walls that prevent equal partnerships and, in some cases, can stop parent participation.  In fact, many parents who burn-out or stop participating report they are "tired of fighting to be heard" or feel their opinions have no worth.  

Professionals need to:

1. Not assume that it is your job to take care of our children and make things easier for us.  We have much valuable information to offer;

2. Remember that keeping your professional distance and using big words or jargon makes us feel you do not care and do not want to communicate;

3. Think about the "when" element as you schedule a meeting to make it easy for parents to participate (fathers too!);

4. Realize that most of us do not need therapy because we did not cause our child's condition and we do have the capacity to be a part of the decision-making team; and

5. Learn how to listen.

Remember, equal is tough because we are conditioned to believe that someone is always in charge.  But equal partnerships benefit our children.

The next word that we should consider in our definition of partnership is independence.  As parents, we want the right to disagree with teachers or other service providers without damaging their professional reputations.  We also must allow the professional the right to disagree with us... but not the right to eliminate our input from the process.  In other words, we do not have to like each other.  We do not have to agree with each other.  We do have to work together to design a program that best meets the needs of the child.

Finally, let's talk about obligation.  The first obligation for both the parent and the professional is to the child.  The child's education or progress is the only issue.  We need each other to develop the whole picture of the child's needs and prepare him or her for the future.  School plus home and community give us a complete picture.  One without the other offers only half the needed information and half the possibilities.

As parents, we are guaranteed the right to participate in decisions concerning our children.  This right carries an obligation.  Participation is our responsibility.  The professional in this partner-ship is responsible for recognizing the value of our opinions and for facilitating or making parent participation easy.  The final obligation for both parent and professional is to stop looking at each other as adversaries and to start advocating for the needs of the child together.  We both need to communicate, facilitate, educate, and participate.

This article is adapted from Pro-Oklahoma Newsletter, Vol. 4, No. 2, Spring 1990, Parents Reaching Out in Oklahoma, Oklahoma City, OK.  It was adapted from an article originally published in ECAC News Line, Exceptional Children's Assistance Center, Davidson, NC.

Anthony Fernandez, age 9 1/2

Top of page

---

APPROPRIATE ASSERTIVENESS

Assertive behavior yields positive results.  Sometimes people confuse being assertive and being aggressive.  Following are definitions to describe these behaviors and their anticipated outcomes:

Assertive Behavior

Definition:  Interpersonal behavior in which an individual actively communicates his/her personal rights without violating the rights of others.  Assertive behavior is a direct, honest, and appropriate expression of one's feelings, opinions, and beliefs (Alberti and Emmons, 1979; Lazarus, 1971).

Results:  Development of long term effective relationships; concerns and questions are discussed and handled in a positive manner.

Non-Assertive or Passive Behavior

Definition:  Interpersonal behavior that enables an individual's rights to be violated in one of two ways:  1) an individual ignores his/her personal rights; 2) others are allowed to infringe upon an individual's personal rights.  The individual is denying and inhibiting him/herself from expressing actual preferences.

Results:  Person experiences behavior resulting in hurt and anxious feelings.  By allowing others to violate one's rights, desired goals are seldom achieved.

Aggressive Behavior

Definition:  Behavior in which an individual expresses his/her rights without consideration for the rights of others. 

Results:  The violation of the rights of others results in domination and humiliation.  Although goals may be perceived as accomplished, negative feelings and frustration are generated as end results.  Also, results may be short lived since cooperation is needed by all to ensure success of a program.

Emilia Autin-Hefner, age 4

Top of page

---

ASSERTIVENESS INVENTORY FOR PARENTS OF CHILDREN RECEIVING SPECIAL EDUCATION SERVICES

This questionnaire has to do with your interactions with school personnel.  Think back about the past year and how you responded in meetings when interacting with your child's teacher and child study team.  Answer the questions in terms of how you did respond, not in terms of how you would have liked to respond.  Please answer all the questions by circling your response.

Now that you've completed the test, take a look at your answers.  Ideally, your answers should fall into the "always" or "usually" columns.  For those areas in which you answered "sometimes," "occasionally," or "never," you may need to consider working on improving these skills.

Top of page

---

BECOMING AN ADVOCATE FOR YOUR CHILD

1.  Know your child's abilities.

* Understand your child's disability.  
* Identify your child's needs and your family's concerns, priorities, and resources.

2.  Consider a wide range of possible issues:

a. Medical

* Does your child have a medical home (a place where professionals have a complete picture of his/her medical needs)?  
* Does your child require assistive devices (braces, glasses, etc.)  
* Are you registered with Special Child Health Services if your child has significant medical needs or disabilities? (See Resources in Appendix J)

b. Related Services

* Does your child need occupational therapy?  Physical therapy?  Recreation?  Travel training?  Counseling?  
* Does your child need speech and language therapy (for expressing or understanding ideas through communication)?  
* Have you considered integrating therapies into general education classroom activities?  [1]

c. Positive Behavior

* Are you able to manage your child's behavior?  
* Does s/he get along with peers?  
* Are there particular times, places or people that cause your child to exhibit negative or challenging behaviors?  Do you understand why your child exhibits these behaviors (the "functions" they serve)?  
* Could your child benefit from a positive behavioral support plan?

d. Self Help

* Is your child satisfactorily toileting, grooming, eating, dressing, etc.?

e. Social / Emotional Development

* Does your child have positive relationships with peers, family members, other adults?  
* Does your child participate in social activities?  
* Does your child have friends at home and at school?  
* Is your child becoming a contributing member of the community?

f. Diagnosis and Assessment

* Do you understand the results of testing and are they appropriate to your child?

g. Educational Progress

* Is your child's program appropriate to his/her abilities and needs?  ("Appropriate" means tailored to meet your child's unique needs and to develop his/her strengths)  
* Does the program bring your child into contact with non-disabled children to the maximum extent appropriate?

h.  Recreation

* Is your child involved in a social activity program such as Scouts, a YMCA program, the 4-H, or a computer club?

i.  Family Support

* Do you receive respite care?  
* Do you visit with friends?  
* Are you involved with family activities, friends, a support group?

j. Legal Services

* Do you need legal assistance?

k. Financial Supports

* Are you eligible to receive financial assistance?  Social Security benefits?

3.  Prioritize your concerns; no one can work on every front simultaneously.

4.  Become involved with and seek help from:

* Parent support groups  
* State protection and advocacy agencies  
* State and local voluntary agencies  
* Participate in teacher conferences, parent group meetings, school functions

5.  Be prepared.

* Research services and options  
* Know your rights and relevant laws or where to get information about them  
* Know how the system operates and know how to work within it for your child's benefit  
* Know agency personnel, school board members, school psychologists, legislators  
* Obtain names, addresses and telephone numbers as contacts for help and information  
* When talking with people face-to-face or on the phone have records available  
* Follow up phone conversations with a confirming letter  
* Maintain a home file and take it to meetings (see "What to Include in Your Child's Home File" in this manual)  
* Review records before meetings

6. Develop good communication skills; it is just as important to know how to say something as it is to know what to say.

* Build and maintain good relationships with those working directly with your child  
* Maintain close contact with the teacher, share information and suggestions, be supportive
* Communicate a sense of teamwork  
* Don't feel intimidated or attempt to intimidate others  
* Try to see things from the other person's perspective  
* Come to meetings prepared to be positive  
* Try not to feel resentful or get defensive  
* Ask questions when in doubt  
* Avoid endless complaints

7.  Encourage immediate action.

* Be goal oriented.  Resolve one issue at a time.  Know the purpose of your call or meeting and stay on that purpose until it has been achieved.  
* Before hanging up the phone or leaving a meeting, know exactly what, when and where your next steps are.  
* Document events and decisions through:

a. Letter writing:  Letters create pressure and build accountability and encourage others to become more productive and responsible.

b. Note taking:  Get names and roles of those present as well as the date, place, time, and  primary purpose of meeting.

c. Record keeping:  Record and follow up on timelines.

8.  Follow up.

* Periodically visit services and programs and talk with your child, the teacher, and service providers to see if decisions are being followed.  
* Speak up if plans and decisions are not followed.

9.  Remember to acknowledge people's efforts.

10.  Be persistent.

[1] The law requires that integrating therapies is the first option considered in the delivery of services

Adapted from: The National Information Center for Handicapped Children and Youth (NICHCY), article in November 1984 Information Newsletter: Self-Advocacy: How to be a Winner, Tony Appolloni, Ph.D., California Institute on Human Services, Sonoma State University, Rohnert Park, CA and Five Steps to Becoming Your Child's Best Advocate, Exceptional Children's Advocacy Council, Davidson, NC 28036.

Taylor Brown, Age 3

Top of page

---

IF YOUR CHILD IS IN FOSTER CARE

If your child is in foster care but your rights have not been legally terminated, school authorities must seek your consent before evaluating or placing your child in special education.  Only if you cannot be found, despite diligent efforts, or if you are not mentally capable of making a decision regarding consent, can they proceed without you. 

Top of page

---

IF YOU ARE A FOSTER PARENT

If you are a foster parent of a child whose parent is unavailable or incapable, you may make educational decisions concerning the child's education if the foster child is your relative (kinship foster child).  If you are a non-related foster parent who has a long-term relationship with your foster child, you are "the parent" for purposes of making special education decisions.

If you are a short-term foster parent, you may become your foster child's surrogate parent.  A surrogate parent is appointed if the child has no parent, guardian, or person acting as a parent.  In order to become a surrogate parent, you must understand your role as a surrogate parent, commit to fulfilling that role on behalf of your foster child, and have no interests that conflict with the interests of your foster child.  The district must name you as the surrogate parent. 

If you are not willing to be the surrogate parent, another surrogate parent must be appointed to make educational decisions for your foster child.  Surrogate parents may not be employees, agents, or officers of the local school district or State Education Department or Social Services Department.  They must undergo the surrogate parent training and, whenever possible, must be the same racial, cultural, or linguistic background as the child (Foster parents are not considered employees of the Social Services Department).  Your foster child's social worker, caseworker, or foster care agency cannot be appointed as the surrogate parent. 

Top of page

---

THE NEED FOR SELF-ADVOCACY

All people have a basic right to equality, including people with disabilities.  It is necessary that as parents we ensure this right for our children.  In order to actually gain equality, young adults must "take control of their own lives, speak independently, act on their own behalf and most of all be respected for who they are - people first."  This control involves participating in the community as valuable, productive and independent citizens.

Children must learn appropriate behaviors, how to receive services and make their abilities and desires known.  To begin this learning process, parents should give their child choices to allow them to associate decision-making with consequences.  If we give our children no choice or responsibility for their actions, we teach that irresponsible behavior is acceptable.  "It is not wise to allow children to develop bad habits because they experience disabilities and we feel sorry for them."  These inappropriate behaviors lead to alienation from their peers and the community.  In addition, children must realize they have choices and learn how to express them effectively.  Knowing the consequences, a child may prefer to participate in a particular activity or choose a particular option.  Being able to express this desire creates a great feeling of satisfaction.  When allowed to make independent choices and express control over their lives, children and young adults feel more responsible and gain more confidence.

We must help our children to feel they are valuable contributors to the family and community in order for them to express these roles fully.  For example, when we give them chores around the house, they realize they are expected to do their share along with everyone else.  Responsibility, self-confidence, appropriate behavior, and independence are important skills and concepts for children to learn to enable them to participate and contribute to the community.  "Learning to behave responsibly requires support, practice, and mistakes" - but when children are successful, they feel good about themselves.  Children should be invited to their own IEP meetings and have an opportunity to briefly reflect on their progress during the current year and help define goals and supports for the coming year.  They may decide not to stay for the entire meeting, especially young children, but having a chance to state their views gives them more control over school life and a chance to practice self-advocacy.

In becoming more involved and productive members of peer groups and a community, a child (with the parents' help) must plan for his/her future and understand his/her desires and needs.  Equally important is helping the child to recognize his/her abilities.  This self-awareness allows the child to have reasonable expectations and set desirable goals which are designed for success.

Persons with disabilities want the equal opportunity for "independent living - the ability to participate in society, work, have a home, raise a family, and generally share in the joys and responsibilities of community life.  This includes the ability to choose where to live and how, and... to carry out activities of daily living that non-disabled people often take for granted."

Our children have desires and dreams for themselves that must be heard and acknowledged.  We should help them experience satisfying living, working, and recreational opportunities.  Through independence, understanding, and responsibility they become more confident and content with themselves and their abilities.  This helps them to deal better with their disabilities, thereby becoming better self-advocates and more effective communicators.  A cycle begins to develop which makes their lives personally rewarding.

Adapted and quoted from: Roots and Wings - A Manual About Self-Advocacy, Susan Lehr, The Federation for Children with Special Needs, Boston, MA 02116.

Top of page

---

EDUCATIONAL SELF-ADVOCACY TIPS

Go over these tips with your child.  Talk about the ones that apply.  Let your child begin to advocate for him/herself as much as possible, but never push a student into the advocate position.  Children should gradually take on more responsibility as they become more self-assured, knowledgeable about their needs, and mature enough to advocate for themselves.  The groundwork for self-advocacy should begin in grammar school.

1. Before your child can learn self-advocacy, s/he needs to fully understand his/her strengths and weaknesses or disabling condition(s).

2. Discuss and rehearse what your child might say to the teacher(s) and the manner in which it could best be presented.  Remember to help your child learn to be polite and tactful.  Right or wrong, the teacher will be his/her teacher for the year and your child must live with this situation.

3. Not everyone may agree with all classroom modifications in spite of a well-developed IEP.  Your child must, therefore, be able to state why s/he needs these changes.  If needed modifications are not provided, you, and eventually your son or daughter, must be prepared to find ways to convince t