Providing support and information to families of children with disabilities, chronic illness and other special health care needs

TxP2P Library

Taking Care of Yourself

Bill of Rights of Parents of Children with Disabilities

How to Advocate For More Services for Your Child
Compiled by Laura J. Warren, TxP2P

I get many phone calls from parents who are struggling with their early childhood program, school, or insurance company to get the services they feel their child needs. I decided to ask the experts on these subjects – parent professionals who deal with these questions every day – people I go to or send parents to when I don’t have the answers. It finally dawned on me that I could get the word out to more parents by putting it in the newsletter. I hope it helps!

When Working with an Early Childhood Intervention Program:
By Susan Prior, Information & Training Support Coordinator, ECI State Office

If your child is receiving services from an Early Childhood Intervention (ECI) Program and you are not happy with the services or feel your child requires more, follow the steps listed below to help resolve your concerns:

• When your child enters the program, you and your team members from your program will develop an Individualized Family Service Plan (IFSP) of what the services will look like based on your child and family needs. You are a very important part of that team and you have the right to receive answers to any questions you may have. You need to ask!
• Sometimes parents and ECI staff disagree. It is important for you to talk with the person you disagree with. If that is not possible, talk with your service coordinator and/or program director. If you are not satisfied, you can call the State ECI office at 1-800-250-2246 and ask for help resolving your disagreement.
• You have the right to ask for a change in your IFSP whenever your child has met a goal, isn’t progressing or the plan is not appropriate. Your program is required to review your IFSP with you every six months and more often if needed.
• Most importantly, keep communication going with your program.
• Know your rights! Refer to your ECI Handbook or call the ECI State Office at 1-800-250-2246 if you have any questions.

When Working with your Child’s Special Education Program in Your Local ISD:
By Rosemary Alexander, PhD, Parent and School Support Team, Austin ISD

Having your child covered by IDEA, the federal law that mandates special education services, is a great opportunity. Your child has the chance to receive the supports and individualized education he or she needs while you, the parent, have a chance to be involved in the decision making process regarding your child’s educational services. IDEA provides you with a way to be a part of the educational team and voice your concerns, what might work best to help your child succeed, and your vision for your child’s future.
However, to take advantage of these opportunities, parents must know about IDEA, understand the decision-making process, and learn how to be successful advocates for their children. Here are a few pointers for being an effective part of the school team:

• Stay in communication all year.

Get to know your child’s teacher through chance encounters, phone conversations, and informal meetings.
Set up a regular communication system, such as a notebook, a checklist, regular phone calls, etc, that keep both school staff and family informed about routine concerns and events.
Volunteer at the school or ask how you can help from home.
Acknowledge through small gifts or treats that you appreciate the efforts of school staff.

• Get ready for IEP meetings (called ARDs in Texas ).

Keep a copy of your child’s IEP (Individual Education Program) and latest evaluation handy. Know what it says.
Before the annual ARD or IEP meeting, meet with the teacher and other key service providers to look at the current IEP and discuss how to change it for the next year.
Get to know IDEA and the IEP process. Check out the following websites: www.advocacyinc.org, www.thearcoftexas.org, www.nichcy.org, and www.wrightslaw.com.
Go into the IEP meeting with a clear idea of the issues and what outcomes you want from the meeting.
Take a picture of your child or have your child attend the meeting. Provide a written statement from your child of what he or she would like to say to teachers, or have him or her say it directly.

• Act carefully and thoughtfully when disagreements arise.

If you and school staff run into disagreements or hard feelings, take a deep breath and step back from the situation. Do not explode, but rather find someone outside of school to hear your story and sympathize with your emotions.
Write down what you are mad about, but also what you would like to see happen.
Find out what your school-system hierarchy is—who is the key person at each management level. Find out who allocates resources and can make a difference.
Now take action. Write letters and talk to the right people: start with the person closest to the problem, and then if you do not get help there, talk to the person next up the line.
Approach each meeting or phone conversation as a business meeting, with a business-like attitude.
First meet informally to resolve the problem, then have an ARD to write your new decisions into the IEP.
Ask for more testing to get a more accurate picture of your child’s needs and abilities.
Bring in tangible evidence about your child’s abilities and needs, such as videos of your child doing things he does not do at school or participating with friends outside of school; make a strong case for what you are asking for your child.
Think before meetings about areas where you are willing to compromise and where you cannot compromise.
Keep your poise and focus on issues, not personalities, facts not feelings. Do not look for revenge but try to solve problems. Keep the school team looking at long-term outcomes for your child: what’s really important for him or her to learn before graduating from school? What will make this child successful after graduation?
If all else fails, find out about mediation and due process.
Consult www.feta.com for many more advocacy and conflict resolution suggestions.
Teach your child to participate also.
As your child gets older (around middle school), start to involve him or her in the IEP process as much as possible. Guide your child to be a “self-advocate,” able to describe his or her disability and the accommodations needed.
Encourage your child to make choices at first about little things, then about more important issues.
Give your child opportunities to speak for him or herself in a variety of situations.
Work with the school team to coach your child to speak up in the ARD meeting, even to lead it as he or she gets older. Begin to help your child to think about the future, what work to do, where to live, and how to find friends—the elements of a good transition plan for the future.
Good luck in the process of building a team with school staff and in building a positive, productive relationship with your child’s school.

When Working with your Insurance Company:
By Leah Rummel, Executive Director, Texas Association of Health Plans

I receive many calls from parents having problems navigating their insurance to obtain services for their children. I have found over the years that navigating the system has become more complicated due to the unending arrangements physicians and providers have with the insurance company. Most of these are not known by you, the parent, but affect how you can receive services.

My first advice to parents is:

• Ask for case management. If your insurance company has case management ask for it or insist to have those services. You life will be much easier if you only have to deal with one person at the company whose job is to navigate the system for you. Case managers have been known to find alternatives to services that may not be covered by the insurance, get approval for services that may be less expensive but more appropriate to your child, find other resources available in the community for your needs and suggest equipment, specialists or the latest technology available for your child that you may not know about.
• Read your policy. Never be without your policy. Your policy will tell you what is covered and how much your costs will be from the coverage. Most people who call me do not have their policy, do not know if they have a HMO or PPO, and do not know if their policy is a self-funded ERISA plan or a fully insured regulated plan. Ask your employer for a copy of the policy and find out if it is an HMO, PPO, Point of Service Plan or EPO. Find out if your plan is a self-funded plan regulated by the federal government or a fully funded plan overseen by laws in the State of Texas . The rights of members and the benefits are usually better in a fully funded plan.
• Know your rights. You always have the right to appeal a denial; you usually have a right to have an independent review for medical necessity cases and you have the right to sue your insurance company if they have incurred harm. You have the right to information concerning your policy, and the list of physicians and providers on the network. You have the right in most cases to never be charged more than the deductible or co-payment for services with in-network physicians or providers and you have the right for help from the Texas Department of Insurance. Their toll free number for assistance is 800-578-4677 (in Austin , call 463-6169).
• Do not be afraid to ask for services. Many people I talk with will not ask for services. I always recommend asking for what you want. The worst that a person can say is no. Also, when you get a no, do not be afraid to go to their supervisor, and then theirs, or to the Texas Department of Insurance. A large percentage of appeals for denied cases are overturned.
• If you have a choice of insurance companies, pick carefully . If your company has a choice of insurance companies to choose from, pick very carefully. You need to take into consideration which physicians your child uses regularly and if they are on the network, what services your child uses regularly and what level of reimbursement those are paid for by the insurance company, whether network restrictions can work for you and how much out of pocket can you afford. You can also ask other parents about their experiences with the insurance company or look at their complaint record at the Texas Department of Insurance.

Remember to ask for help when you do not understand your policy.

Who are People with Disabilities?

People with disabilities are -- first and foremost, people -- people who have individual abilities, interests and needs.  For the most part, they are ordinary individuals seeking to live ordinary lives.  People with disabilities are moms, dads, sons, daughters, brothers, sisters, friends, neighbors, coworkers, students and teachers.  About 49 million Americans -- one out of every five individuals -- have a disability.  Their contributions enrich our communities and society as they live, work and share their lives.

Changing Images Presented:

Historically, people with disabilities have been regarded as individuals to be pitied, feared or ignored.  They have been portrayed as helpless victims, repulsive adversaries, heroic individuals overcoming tragedy, and charity cases who must depend on others for their well being and care.  Media coverage frequently focused on heartwarming features and inspirational stories that reinforced stereotypes, patronized and underestimated individuals' capabilities.

Much has changed lately.  New laws, disability activism and expanded coverage of disability issues have altered public awareness and knowledge, eliminating the worst stereotypes and misrepresentations.  Still, old attitudes, experiences and stereotypes die hard.

People with disabilities continue to seek accurate portrayals that present a respectful, positive view of individuals as active participants of society, in regular social, work and home environments.  Additionally, people with disabilities are focusing attention on tough issues that affect quality of life, such as accessible transportation, housing, affordable health care, employment opportunities and discrimination.

Eliminating Stereotypes -- Words Matter!

Every individual regardless of sex, age, race or ability deserves to be treated with dignity and respect.  As part of the effort to end discrimination and segregation -- in employment, education and our communities at large -- it's important to eliminate prejudicial language.

Like other minorities, the disability community has developed preferred terminology -- People First Language.  More than a fad or political correctness, People First Language is an objective way of acknowledging, communicating and reporting on disabilities.  It eliminates generalizations, assumptions and stereotypes by focusing on the person rather than the disability.

As the term implies, People First Language refers to the individual first and the disability second.  It's the difference in saying the autistic and a child with autism.  (See the other side.)  While some people may not use preferred terminology, it's important you don't repeat negative terms that stereotype, devalue or discriminate, just as you'd avoid racial slurs and say women instead of gals.

Equally important, ask yourself if the disability is even relevant and needs to be mentioned when referring to individuals, in the same way racial identification is being eliminated from news stories when it is not significant.

What Should You Say?

Be sensitive when choosing the words you use.   Here are a few guidelines on appropriate language.

-  Recognize that people with disabilities are ordinary people with common goals for a home, a job and a family.  Talk about people in ordinary terms.

-  Never equate a person with a disability -- such as referring to someone as retarded, an epileptic or quadriplegic.  These labels are simply medical diagnosis.  Use People First Language to tell what a person HAS, not what a person IS.

-  Emphasize abilities not limitations.   Say, for example, a man walks with crutches, not he is crippled.

-  Avoid negative words that imply tragedy, such as afflicted with, suffers, victim, prisoner and unfortunate.

-  Recognize that a disability is not a challenge to be overcome, and don't say people succeed in spite of a disability.   Ordinary things and accomplishments do not become extraordinary just because they are done by a person with a disability.  What is extraordinary are the lengths people with disabilities have to go through and the barriers they have to overcome to do the most ordinary things.

-  Use handicap to refer to a barrier created by people or the environment.  Use disability to indicate a functional limitation that interferes with a person's mental, physical or sensory abilities, such as walking, talking, hearing and learning.  For example, people with disabilities who use wheelchairs are handicapped by stairs.

-  Do not refer to a person as bound to or confined to a wheelchair.  Wheelchairs are liberating to people with disabilities because they provide mobility.

-  Do not use special to mean segregated, such as separate schools or buses for people with disabilities, or to suggest a disability itself makes someone special.

-  Avoid cute euphemisms such as physically challenged, inconvenienced and differently abled.

-  Promote understanding, respect, dignity and positive outlooks.

"The difference between the right word and the almost right word is the difference between lightning and the lightning bug."  Mark Twain

What Do You Call People with Disabilities ?  Friends, neighbors, coworkers, dad, grandma, Joe's sister, my big brother, our cousin, Mrs. Schneider, George, a husband, wife, colleague, employee, boss, reporter, driver, dancer, mechanic, lawyer, judge, student, educator, home owner, renter, man, woman, adult, child, partner, participant, member, voter, citizen, amigo or any other word you would use for a person.

Kids As Self-Advocates

What do we mean by “Respectful Disability Language”?

The use of outdated language and words to describe people with disabilities helps to continue old stereotypes. Being aware of the words we choose when we communicate is the first step toward correcting injustice. This is a guide to using appropriate words and language when talking to or about people with disabilities.

Why is it an issue for youth with disabilities and/or health care needs?

Language = Power

Imagine living your whole life always having to explain why the words that many people use frequently, are hurtful and offensive to you. Over and over you try to educate your teachers, co-workers, friends, even your family about how words and terms they use around and about you make youi feel badly about yourself. Many of us are brought up in homes where we are the only one with a disability and have never learned to think of ourselves or other people with disabilities as proud individuals that just happen to have a disability. Instead, many of us grow up not realizing that internalized oppression [believing the bad things about people with disabilites as potrayed by society] among people with disabilities is an ongoing struggle. The medical, legal, and political parts of our society have defined how we describe ourselves and our disability, not the way that people with disabilities have chosen. These words often times do not describe us or personal preference. These portrayals led to unwanted sympathy, or worse, pity toward individuals with disabilities. Respect and acceptance is what people with disabilities would rather have.

By carefully choosing our words, we can make a tremendous difference in the lives of other youth with disabilities. Using respectful language can dramatically change our communities for the better.

Some Guidelines for Talking about Disability

• Do not refer to a person's disability unless it is relevant. For example, don’t ask “What’s wrong with you?” or refer to the “girl in the wheelchair”.
• Use "disability" rather than "handicap" to refer to a person's disability. When talking about or referring to parking spaces or bathroom stalls used by people with disabilities say "accessible" or “disabled” parking or “accessible” or “disabled” access stall.
• Never use "cripple/crippled" when talking about disability in general or the person.
• Don't portray people with disabilities as overly courageous, brave, special, or superhuman. This makes it sound like it is unusual for people with disabilities to have talents, skills or to live life like everyone else.
• Don't use "normal" to describe people who don't have disabilities. It is better to say "people without disabilities” if necessary to make comparisons.

Outdated Language
Words you should NOT use when describing or talking about a person with a disability

• Crazy, insane
• Cripple, crip, gimp, lame
• Handicapped, physically challenged, special
• Retarded, slow
• Victim, stricken
• Wheelchair bound, confined
• Brain damanged
• Hyper sensitive
• Dwarf, midget, little person
• Invalid, deaf, dumb, deaf mute
• Deformed
• Poor, unfortunate
• Spastic, spaz
• Suffers from (an illness or disability)
• Respectful Disability Language

Words you SHOULD use when describing or talking about a person with a disability  

• Psychiatrically disabled
• Disabled
• Congnitively disabled
• People with disabilities
• Deaf or hard of hearing
• Blind or visually impaired
• Non-disabled
• Wheelchair user
• Someone of short stature
• Non visible disability
• Hidden disability
• Survivor
• Developmentally disabled
• Learning disabled

Remember to also take into consideration differences in culture as well as age. What is “OK” for some folks, is not “OK” for others. If you are unsure, please ask the person how she or he describes himself or herself.

When in doubt, call the person by his or her NAME.

Youth with disabilities and health care needs speaking on behalf of ourselves and our friends

 Visit us on the web www.fvkasa.org
KASA, Family Voices 2340 Alamo SE, Suite 102 Albuquerque, NM   87106
Ph: 773/338-5541 Fax: 773/338-5542 E-mail: julie@fvkasa.org

Kids As Self-Advocates

Youth Friendly/Accessible Language

Youth friendly/accessible language is helpful to all audiences. The KASA project advocates for using accessible language because it is often the biggest barrier [something that stops them], keeping young people from being involved in leadership.

What Youth Friendly/Accessible Language means:

• Using clear language – avoiding or explaining conceptual words [words that include a lot of ideas in one word]
• This can be done by exactly explaining what the word means, [like was done for the word conceptual in the statement above], or by explaining what you mean a different way [look for examples on this sheet]
• Make sure to explain acronyms [an acronym is letters that stand for words. For example, KASA is an acronym for Kids As Self Advocates.]
• Use examples to explain complex ideas and concepts
• Steer clear of jargon [terms or words that are used specifically in your area of work or community]

Using youth friendly/accessible language means being inclusive of the young people and people with disabilities in the room. Make sure to assume that the young people and people with disabilities have experience with the topic, just as a presenter would assume of any non-disabled person/adult in the room.

What Youth Friendly/Accessible Language Does NOT Mean:

• That a presenter needs to use slang
• That a presenter will not appear to be professional [that a presenter is going to be seen as not knowing what they are talking about or that they are not smart]
• Often people respond in a really positive way to youth friendly/accessible language. It makes everyone more comfortable, and people can relax and really be open to learning.

Accessibility in a Presentation:
There are many different ways to make presentations accessible to people with a variety of disabilities. A presenter should not worry about trying to figure out what everyone in the room can or cannot do. Instead they should focus on sharing their information in as many different ways as possible.

Ideas to Use:

• If a presenter is going to use interactive activities, [in which the group is involved in the presentation], then making sure there are at least a couple of ways to respond is helpful.
• For example: if asking a large group to answer a question by raising their hand, also say “or by clapping or give a shout out.”
• If asking people to do work in small groups, make sure the questions are clear, written down and read aloud. Ask the small groups to try and get information from everyone who wants to share.
• A presentation should also be given in as many ways as possible; visually [where people can read along], verbally [reading information aloud], giving people a chance to share their own knowledge/experience
• Have your materials [forms/worksheets/information pages] on CD disks for those who may need items in accessible format [always make sure to have a couple, and announce you have them to the group, or offer to send people items in accessible format through email/mail].

Helpful Hint: When trying to put something in youth friendly/accessible language, just try to be as clear as possible. [Note: Ask a young person to review written materials, or offer to read these to them to make sure they understand and that they think others will also understand.]

Examples:
“Today we are here to learn effective tools in advocating for health care.”
Youth friendly/accessible language: Today we are here to learn useful ways to advocate for ourselves and our community and talk to those who make decisions about these issues that affect us, about healthcare.

“Formalize structure and membership of committee”
Youth friendly/accessible language: Figure out and agree on who will be involved and how the committee will be structured [who will make decisions, how will decisions be made, how the committee will work].
“Develop outreach materials to recruit participants and distribute via email.“
Youth friendly/accessible language: Put together [create] announcements and flyers to find people who want to be involved in our work and then send these out over email.

Youth with disabilities and health care needs speaking on behalf of ourselves and our friends  

Visit us on the web www.fvkasa.org
KASA, Family Voices 2340 Alamo SE, Suite 102 Albuquerque, NM   87106
Ph: 773/338-5541 Fax: 773/338-5542 E-mail: julie@fvkasa.org

Getting Ready for the Future For Families of Children (any age) with Special Needs
By Rosemary Alexander, Austin ISD Parent and School Support Team

Transitions and change are often difficult, so how can we make them easier?

• Prepare to be the advocate for your child for the long haul.
• Create a good record keeping system and use it, clean it out occasionally, but keep on using it.
• Learn about special education law.
• Develop your negotiating and communication skills.
• Learn about community resources.
• Learn about your child’s disability and be able to describe it clearly and briefly to others.
• Prepare to be your child’s care-provider for the long haul.
• Adopt healthy habits—get enough sleep, exercise, and eat well.
• Build a support network.
• Build opportunities to have fun into your life.
• Learn relaxation techniques.
• Develop a long-range vision for your child and your family
• When possible, start to imagine your child’s future.
• Consider what it will take to make that future possible. What does your child need to know how to do in that future?
• Plan now how you will provide opportunities for your child to learn those skills.
• Be the keeper of the vision, hopes, and expectations. At meetings about your child, remind people of your long-term goals. You and your family are the only ones present in your child’s life over the long term. You are the consistent force while professionals of all kinds will come and go.
• Prepare for change and transitions.
• Anticipate the transition points—ECI to EC, EC to elementary, elementary to middle school, and so on. Know that you will need to do extra planning at these points, and at other points that are not as obvious.
• Find out all you can about the next step. For example, go to the new school, meet the new teacher or other staff, take your child to see the new school ahead of time, talk to other parents at the new school, or who have made similar transitions. The more you see and know about the new place, the less you will fear it.
• Prepare others in the family for change, such as siblings. If you know that change affects your mood, your child’s behavior, etc., get extra support at that time.
• Build in ways to communicate in the beginning. For example, at a new school, request a meeting after the first 3-6 weeks to evaluate the situation. Try to solve problems before they get bigger.
• At any new place, find out whom to talk to when problems arise. What is the hierarchy, the ladder, the structure? Who is in charge?
• Whatever your child’s future, you will need extra money! Face it now and plan for it.
• Get on these waiting lists or find out about these services today:

*CLASS: 877-438-5658

*MRLA or HCS: 800-252-8154

*MDCP: 800-252-8023, ext 3061

*SSI/Medicaid now if your family meets income/disability guidelines or when your child turns 18 based on his/her income/disability.

(For more info on these programs go to our website: http://www.main.org/txp2p/ FinancialSites.html )

• To ensure that your child will be eligible for public benefits at age 18, place his or her assets into a special needs trust. Be sure that your will leaves nothing to your child with a disability. Write a will now with a lawyer who knows about estate planning for families of children with disabilities.
• Know that you will need to find out about getting guardianship for your child when he or she turns 18. Some children need it, others do not, but you need to find out!

Steps to a Quality Adulthood for your Child with a Disability
By Rosemary Alexander, Austin ISD Parent & Teacher Support Team

Make all decisions in secondary school based on whether or not a given option will help your child after graduation.

Get involved in the planning process. When will your child graduate? What are his or her goals for after graduation?

Be sure your child’s teacher is aware of your child’s long-term goals. How can you use school time to prepare your child to fulfill these goals? Look at all aspects of life, not just work.

2. Prepare your child to have a job.

Build up a resume with volunteer work after school or in the summer, and jobs on and off the school campus. Request vocational training that includes off-campus experience. Get to know your campus staff who work on transition and work opportunities. Find out about job opportunities on campus and near the campus. Be sure your child is linked up with Texas Rehabilitation Commission during his/her last year of school.

3. Plan ahead for financial security.

If your child will never be able to earn a living wage, how will he or she meet basic needs? Get on the waiting list for CLASS and MRLA. Link your child with SSI/Medicaid and MHMR.

*Medicaid Waiver programs –eligibility based on disability; programs provide support services. (CLASS, MRLA, Deaf Blind/Multiple Disability Program, etc)

* SSI/Medicaid and MHMR—based on disability + income (family income before your child is 18, child’s income at age 18); SSI provides monthly payment for room, board and clothing; Medicaid provides health insurance; MHMR provides a variety of support services.

4. Plan your estate so that your child can maximize government funding and services.

When your child applies for SSI/Medicaid at or after age 18, she or he must have assets below $2000. So you need to look carefully at your will, insurance policies, the wills of other family members, etc. to be sure that your child does not directly inherit and lose government benefits. You can set up a special needs trust to shelter assets over $2000, but this money cannot be used for the basic necessities paid for by SSI. Seek out a lawyer who has relevant experience in this area to learn the details and set up a trust, or use the Master Pooled Trust at The Arc of Texas. The CRISP organization has a list of experienced lawyers.

5. Consider whether or not your child will need guardianship and plan accordingly.

When a child turns 18, society assumes that he or she is competent to make his or her own medical and financial decisions. If your child is not able to make such decisions, you have to “sue” the state to become his or her guardian. Then you are empowered to sign for him or her in any financial or medical situation. You can also get partial guardianship, so that you make decisions in only one of these areas.

You should find an experienced lawyer to represent you and another to represent your child to go through the process of appearing in probate court to become the guardian. The preparation usually takes 2-3 months and you will not be granted guardianship until the day your child turns 18. It may cost up to about $3000.

6. Plan for where your child will live and how he or she will spend the day.

Even if you plan for your child to live with you forever, you won’t live forever! Or perhaps your child plans to live independently, out of your home. In either case, get creative and consider co-operative living, roommates, foster families, or other shared living arrangements. Link up with the agencies that can help you marshal resources for the big move, such as Disability Assistance of Central Texas, Austin Resource Center for Independent Living, The Arc of the Capital Area, Austin Housing Authority, Texas Home of Your Own, MHMR, Marnie Paul Arts Center, McBeth Recreation Center, etc. Plan for basic expenses (rent, utilities, etc.) plus such things as transportation, personal support as needed, safety, social and recreational needs, and work and other daytime activities.

7. Go through a focused planning process.

Consider doing a person centered plan, which helps you and your child to write down long-term goals, map a strategy for attaining them, and build a support team. A similar approach is described in A Good Life, a book from Canada available atwww.plan.ca. Help your child to become as independent as possible through learning about self-determination and self-advocacy, and by encouraging independence through your daily routine. Use the Internet, the school, friends, and parent groups to find out about resources, gain support, and create a safe and enriched life for your young adult!

Resource Phone Numbers (as of 4/29/03 )

• Texas Rehabilitation Commission—800-687-2676 (job supports after graduation)
• CLASS--877-438-5658 (long-term supports for person with a disability)
• MRLA (for Travis Co.)—483-5804 (long-term supports for person with a disability)
• All waiver programs (supports for person with a disability) at www.dhs.state.tx.us/handbooks/ccad/5000/5100.htm
• Supplemental Security Income (SSI)—916-5404, 800-772-1213
• Arc of Texas —454-6694 (for Master Pooled Trust)
• Home Of Your Own—800-988-4696 (helps people buy their home)

Self-Determination has three primary, interrelated meanings for people with developmental disabilities:

1.     Self-determination is a collective effort, by which individuals and those important to them work to create a life in community, regardless of the political, cultural, or bureaucratic constraints that limit where people live, how they spend their day, and the options considered to be within their capabilities and reach;

2.     Self-determination is a political movement by which people with disabilities, their families and their allies are working on the political, bureaucratic and cultural changes needed for people with disabilities to be fully accepted as citizens and members of their communities; and

3.     Self-determination refers to a redesign of key structural elements of the public/private system of services and supports to people with developmental disabilities and their families.

The “Tools” of Self-Determination described below relate most specifically to the 3 rd meaning of the term, though all three meanings are essential and interrelated. Self-determination as a collective effort by which individuals and those important to them create a meaningful life in community, and self-determination as a political movement provide the energy for the hard and equally creative work of applying the tools of self-determination to redesign a human service system.

As redesigns the system of services and supports to people with developmental disabilities, key structural elements of the system are added or adapted. Essential “Tools” of Self-Determination include individual budgets , independent support coordination , and fiscal intermediaries . These three areas do not exhaust the range of system change issues that need to be addressed, but changes in how these aspects of the system are structured are at the heart of success of self-determination at the personal and family level. They begin to address the conflicts of interest inherent in our historic design of services to people with developmental disabilities, and are at the core of creating a structure that provides the needed flexibility in providing supports and services for both individuals and those who choose to work in support of them.

The ability to plan with and manage flexible individual budgets provides individuals with disabilities the opportunity to create or purchase tailored supports and services. Independent support coordination provides conflict-of-interest free advice and support to enable individuals with disabilities and families and friends to translate “How can I create the life I want to live?” into “How can I draw the support I need from the human services system, in concert with my own gifts and the help of others, to create the life I want to live?” Fiscal intermediaries are simply a means to enable funding to flow smoothly.

DESIGN PRINCIPLES FOR INDIVIDUAL BUDGETS, SUPPORT BROKERING AND FISCAL INTERMEDIARIES

Individual Budgets

Individual budgets are best designed for self-determination when the amount of funding allocated for services for a person is actually controlled by the person and their freely chosen allies. Public dollars are now seen as an ongoing investment in the person's life, with a concurrent obligation for the individual receiving those dollars to use those dollars effectively in obtaining supports and contributing to community. This requires the following design features:

Individually created

The person with a disability and freely chosen family and friends create individual budgets within the service funding and personal income available. This includes being able to create unique “line items” that reflect the distinct ways in which each person wants to live.

Authority over Personnel

Individuals with a disability have the authority to hire people who work for them, whether as independent workers or employees of a provider agency. In fact all employees and consultants work for the person and that person's social support network. Even if another organization assumes some legal responsibility to become the employer of record, all personnel and consultants work for the person with a disability.

Flexible funding

Within approved amounts, dollars can be reasonably moved from line item to line item as long as the essential supports are maintained. New line items may also be created as well as old ones erased.

Independent Support Coordination

The linchpin to the success of creative, highly individual budgets and life plans is the function that is variously referred to as independent support coordination, personal agents, or independent brokering. It is important in designing this function to attend to potential conflicts of interest. This function may help with plan development, assist in organizing the unique resources that a person needs and even assist with ongoing evaluation of these supports. There are many ways that this function can be carried out, from family members doing it to case managers assuming new roles, to various combinations of each.

Independence from Service Provision

It is important to keep this function separate from any form of service provision in order to avoid both the appearance and the reality of conflict of interest. Even those support coordinators who have great integrity should not be put in a position of divided loyalties. Many individuals with disabilities and families have relationships and loyalties in place that need to be respected while this transition proceeds.

Independence from Public Authority

It is also important that this function is provided in a manner in which individuals and families are able to receive advice and support independent from the agency that is responsible for funding. Again, even those support coordinators with the greatest integrity and experience are placed in a position of divided loyalties when they are working for a public authority that has overall fiscal responsibility for the system. This potential conflict is even greater when the county also is a provider of services.

Real Authority

In whatever ways the independence from the public authority is designed, this function has to carry some state, county or publicly sanctioned authority if the support coordinator or personal agent is going to adequately represent the person with a disability. Again, it should be clear that the person who carries out this function works for the person with a disability. It is always their choice who provides this function.

FISCAL INTERMEDIARIES

Fiscal intermediaries are simply organizations, places really, where an individual budget gets parked or banked. The functions carried out by a fiscal intermediary include, but are not limited to, check writing for all bills and personnel costs; tax withholding; paying worker's compensation; health insurance, and other taxes and benefits that might be appropriate depending on the individual’s budget. Some fiscal intermediaries can provide a range of related services, such as recruiting and training of workers hired by individuals and the support network. The fiscal intermediary works for the individual and remains accountable for insuring compliance with all federal and state laws.

There are numerous ways to create fiscal intermediary functions, but all include at minimum:

Individual Budget Isolation

This means that every person’s individual budget is isolated from any other, separate from traditional provider contracts. The money is available upon receipt of an approved request or “invoice” and is accounted for by the fiscal intermediary to the public funding authority as well as to the person with a disability.

Conflict of Interest Free

Fiscal intermediaries have no other duties that conflict with their role. This means that they are independent of service provision. If the fiscal intermediary is a government or quasi government agency, it has specific rules that prohibit the use of this money for any other purpose.

Close to the Person and the Community

Fiscal intermediaries, to the extent possible, should be generic, neighborhood, community organizations that enable the person with a disability to create relationships with personnel who work there in regular community settings, as much as possible like a “neighborhood bank.” 

SURVIVING: what you do to keep going when you are feeling completely overwhelmed because something totally out of your control has taken away your child's equal chance at life.

SEARCHING: what you do when you are looking for answers for your child. You will probably have periods of Searching during your whole life with your child. There are two kinds of Searching:

Outer Searching: looking for a diagnosis or services

Inner Searching: trying to find your identity as the parent of a child with special needs.

SETTLING IN: what you do when the frantic pace of Searching lets up. You begin to choose your battles and balance your child's schedule and your family life. Not only has your Outer Searching subsided for a while, but more important, your attitude about it settles down.

SEPARATING: what you do as a normal, gradual process that occurs in tiny steps throughout childhood. When a child has special needs, the process may need to be altered or slowed down. Extra parenting may be required - you may have to initiate separation, plan it, find it and make it happen. Letting go on your part is also necessary.

Everyone passes through these periods in their own way and at their own time. There is no "right way" to adapt. The tasks in each stage may overlap. They actually have more of a circular quality than a linear one.

SURVIVING

SURVIVING is what you do to keep going when you are feeling completely overwhelmed because something totally out of your control has taken away your child's equal chance at life.

You have something new and frightening to deal with, and you have to begin adapting to an uncertain future. The nature of your child's special needs and their severity does not make them any easier or harder to deal with. When you become aware that your child has a problem, is developing a problem, or is at risk for a problem, you begin to deal with this information in two ways - you cope and you react.

Coping is doing what you have to do one problem at a time, getting by. Coping always feels like you are just keeping up with what you have to do, with little energy for getting ahead of your problems. This is because you are using most of your energy to deal with your emotional reactions to your situation.

Reacting drains your energy and diminishes your feelings of control over your life. You have no sense of direction. There are so many aspects of this experience that you may not have expected and that may frustrate and disappoint you.

Typical Reactions to Surviving:

* Shock

* Bodily Stress & Symptoms: Fatigue; physical symptoms (headaches, stomachaches, chest pains, loss of appetite, lack of sexual interest, etc.); feelings of weakness, fragility, and vulnerability

* Grief and Loss: grief; feelings of helplessness & aloneness; sadness; depression

* Confusion and Fear: confusion & chaos; uncertainty & ambiguity; fear; preoccupation with your child; worrying; asking questions that appear to have no answers

* Guilt and Self-Doubt: guilt; self-absorption, self-pity, & self-doubt; shame and embarrassment

* Anger: resentment & envy; blaming; feelings of betrayal

* Denial: chosen denial; unconscious denial

These reactions are the way many people feel upon hearing sad or frightening news. Anyone who tells you that you "should not" have any of these reactions has not been where you are. No one has the right to judge how you feel. The reactions are temporary, although some stick around longer than you would like. Most of the feelings get resolved or fade as you find you are ready to move on and as you begin to feel you have control of your life once again.

Easing the Surviving Process:

* Understand that your feelings are normal.

* Try to make time for yourself.

* Create/use your support system.

“Being in a state of Surviving doesn’t last forever. It just seems that way at the time.”

SEARCHING

SEARCHING is a time of acting, of moving forward from your reactive stage of Surviving. It is the awakening of a sense of control over your emotions and your life, and a time for seeking understanding about your child, your family, and yourself.

Searching is divided into two types - Outer Searching for answers about your child's problems and Inner Searching for understanding what the problems mean in your life. Searching issues may dominate your life for a while; some may never go away. You will find yourself gaining competence and self-confidence in your parenting role and a new sensitivity as you find your life values and priorities beginning to shift. Searching is a time of active growth and expansion and of gaining a new kind of strength as you seek services to meet your child's special needs. You will soon discover that you have more strength than you ever imagined and you have more potential support than you ever could have dreamed.

Outer Searching:

* Gives you knowledge through the quest for a diagnosis and the search for a label.

* Gives you a new perspective about disabilities through contact with other families and a new awareness.

* Gives you strength through a sense of competence & control, and empowerment.

Obstacles to success in Outer Searching can be:

* child-related issues: your child may not improve as much as you hoped or may lack the stamina or skills required or hates the program you selected or unpredictable medical crises may prevent regular involvement in a program

* parent-related issues: feelings of powerlessness when bucking systems over inflexible rules; frustration or anger if funds are cut or your child doesn't qualify; exhaustion from carting kids to therapy, driving, waiting, etc.; or you may be using Searching as a distraction to keep from dealing with other feelings

* program-related issues: services may be unavailable or too expensive; doctors without answers or who misdiagnose; confusing choices and tough decisions.

There are no perfect programs, infallible interventions, or quick cures. You will learn to balance the benefits of an intervention against the costs to both your child and your family. If you find yourself "stuck" in Searching, you may want to seek help in getting some new ideas about how to move forward.

Inner Searching:

* Involves asking life questions: Some of these questions are the same questions all parents face, but maybe not to the same extent that parents with children with special needs have to. The questions are about being a good enough parent to your child or children, what about the other children, what about the marriage, job, etc. These answers evolve over time, but in the meantime, you may feel anxious, depressed and incompetent because you cannot answer them.

* Involves self-questions: These questions help you know what you can do today to understand yourself better, to identify your own strengths and limitations, and to find new ways to grow. You will learn to recognize what you can control, focus on those things, and work to change them AND learn to take the things you cannot control and let them go or work around them.

Your Inner Search is a journey of self-discovery that begins with the realization that life is going to be different than you had planned. It is looking for a new identity that includes being the parent of a child with special needs. It is the struggle to understand your own attitudes and values about human imperfections, and it is a re-evaluation of your life's goals and priorities beyond your parenting role.

Things You May Become Aware of During Your Inner Search:

* Life is not fair.

* Nobody cares about your problem as much as your do, and no one else can ever really understand what it's like for you.

* No one is going to rescue you and make it okay.

* If you devote all of your time, energy, and thoughts to your child, someone will pay the price, and that someone may be your child.

* Being realistic about your child's abilities and limitations does not mean giving up hope.

* Even if your child does not progress in ways important to you, it does not mean you are a failure.

* Your child and your child's disability have nothing to do with your self-esteem.

* How your child feels about his abilities and limitations is more important than what he can or cannot do.

* Things will change. Some will become harder and some will become easier, but they become different. How you deal with them is what matters.

* Somewhere along the way you are going to make mistakes. Nobody is perfect, so why should you expect it yourself?

* You are not the same person you would have been if your child did not have special needs. You can see that as a disappointment, a challenge, or a blessing.

SETTLING IN

SETTLING IN is seeing the world for what it is and seeing yourself for who you are. It is moving beyond the intense emotions of Surviving, feeling less of the sense of urgency of Searching, and gaining a greater sense of control and balance in your daily life.

Settling In is a time of more predictable, settled-in living. Settling In is a time of integrating your child's special needs into the rest of your life and working to establish a new sense of stability and harmony for yourself and your entire family.

Settling In:

* A shift in your attitudes becomes apparent. Your definition of "normal" changes - you develop a new normalcy within your family. You don't feel as much of a sense of urgency - you realize you don't have to spend every available minute "teaching" your child and that more isn't always better. You find yourself letting go of unrealistic expectations - you do not expect to never feel sad, guilty, or frightened again; you know that Searching will be reactivated from time to time; you begin to come to terms with "what is". You do not worry as much. Settling In is a time of shifting perspective about your child's needs - you shift your focus to finding ways to help your child do whatever is possible by using whatever means are available.

* A shift in your balance becomes apparent. You establish some new priorities for your life and your child's life - you are better able to select what is important now. Your child's total needs have become your focus, not just the disability. You are getting on with the rest of your life - you learn to juggle the daily requirements and try to make some time for yourself. Your daily life may be more predictable. You learn that the balance changes as some things get easier, some things get harder, and many things just get different.

* A shift in control becomes apparent. You no longer feel helpless, incompetent, frightened or confused - you no longer just react. You have a lot more information than you did when you learned your child had special needs and you know who to ask when you have questions. You have new skills for Searching - you are more assertive and knowledgeable, and the professionals you deal with recognize this. You are moving forward with a sense of vitality and purpose - you work on making your life and your family's life as stable and cohesive as possible. You are finding what works for you - you are better able to make choices about your life. You have a network of people. You are a lot more flexible than you used to be - you are more able to control your emotions and are able to relax and be more flexible about the daily ups and downs of life.

Some families are not able to enjoy the normality of feeling Settled In or this stage may be delayed, due to the following obstacles:

* continued medical crises or aggressive/self-destructive behaviors or the physical or mental health of any family member

* lack of financial resources or insurance or adequate insurance

* severe medical, learning, emotional, or behavior problems that families are not able to meet at home

* a marriage or relationship that cannot weather the storm

* single parenting resulting in juggling all the responsibilities

* old Surviving or Searching issues that come back into the foreground

SEPARATING

SEPARATING is a normal, necessary process in development, which occurs in tiny steps throughout childhood. Each step of separation is a step toward independence as your child grows up and away from you and as you let go - one safe step at a time.

The process of Separating includes both emotional separateness between you and your child, and physical separation, which may occur earlier or later than typical when a child has special needs. When Separating issues move into the foreground, there is an increased emphasis on teaching your child skills for community living and on preparing yourself to let go.

Separation for children with special needs often has to be initiated, planned, or supervised by parents. This is not part of the natural order of things, as children and parents typically are both actively engaged in Separating activities. But in the natural order of things, parents and children do separate, and there is a time for parents to expand in new directions. Separating is one more step in your personal growth.

A parent must often make a special effort for the child to have experiences that allow for feelings of independence and growth. Your child may need extra time or intensive training to acquire the knowledge and learn the skills that will increase their future choices of living, working, and socializing in the community.

What Your Child Needs To Separate from You Successfully:

* Self-esteem, persistence, and a sense of humor

* Daily living skills

* Pride in physical appearance

* Living skills practice

* Self-discipline

* Understanding and living with a disability

* Learning to meet challenges

Letting Go: A Parent's Role in the Separating Process:

* Letting go is getting tough on certain issues

* Letting go is an affirmation of your efforts - a sense of freedom from parenting

* Letting Go means giving up some control - allowing others to share in caregiving and teaching

* Letting Go is admitting you can't make your child's disability go away - accepting what you child cannot do is an important step in letting go

* Letting Go feels like you are losing something, and you are - it is going to leave an empty space in your life

* Letting Go means reactivating some Surviving and Searching issues

Obstacles to Separating:

* Child-Related Obstacles: special communication needs, social skill or safety issues

* Parent-Related Obstacles: concerns about how much to protect or pull back, time or support team issues

* Community Obstacles: lack of programs, lack of services or resources - funding, lack of transportation or scheduling problems, negative or hesitant attitudes in community.

(Taken from "Nobody's Perfect - Living & Growing with Children Who Have Special Needs" by Nancy B. Miller, Ph.D., M.S.W., adapted by Laura J. Warren, Pilot Parent Family Resource Center, The Arc of the Capital Area, 1/96)

I was taught that the way to deal with adversity or pain was to "tough it out." If you could avoid showing the pain, then you had "beaten the rap," and dealt with the problem competently. I am a psychologist who works with people who are grieving over profound losses. Few would argue that facing the devastating and continuing loss of having an impaired child is among the most painful experiences that a person can confront. After working with parents of the impaired for many years, I have come to believe that I was given bad advice. I have come to believe that pain is the solution, not the problem.

Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future. Children are our second chance, our ultimate "life products," the reflection and extension of our very being. To know that a human life exists that grows from our genes, our bodies, that is a result of our existence, brings a measure of spirituality into the most hardened individual. Something about our basic sense of being is stirred when we witness the miracle of the continuity of life. What happens when this core experience is marred irreversibly by disability? How does a parent survive the devastation of a handicap in their child that shatters their heartfelt dream? How do they go on? How can they help their child, their other children, themselves?

Before I started working in this field, I noted that people who faced adversity basically became better or worse; none stayed the same. What made the difference? Some parents seem to pull their lives together around their children with special needs. These people helped me enormously as I started to answer some of the important questions that relate to coping with childhood impairment.

I first encountered parents of children with disabilities in the early 1970's. Twelve mothers were gathered together to work on relevant issues. I was the group's facilitator. I began the group using traditional group psychotherapy methods, an approach designed to intervene on psychopathology. That approach did not work for simple reason: those mothers were not suffering from pathologies they were reeling form the impact of having disabled children. Gradually, I let go of the old ways of doing things and permitted myself to listen and learn from this courageous group of parents. Slowly, a pattern emerged that surprised me. It became evident that these people were manifesting a grieving process. This left me confused. It was clear that they were alternately anxious, angry, denying, guilty, depressed or fearful, but they were not internally "disturbed" people. Conversations focused on experiencing regrets, being overwhelmed, and other feelings common to people who are bereaved. My puzzlement: "Who died?" At that time, my understanding of grief was simple, concrete, and exclusively tied to death.

What followed was a remarkable process. The group members struggled with a number of concepts that led us to some powerful contemplations about parental grief. Is it the loss of a "normal" child? Is it the disruption of one's "normal" lifestyle? Is it the sense of shame or humiliation that is experienced with family, friends, or other peers? Is it the profound disappointment that some experienced with the ineffective responses of their ostensible support group? We might have shared such thoughts endlessly, until I formulated a key question that helped to bring these diffused feelings and thoughts into focus. It came out innocently enough: "Think back to when you were anticipating the birth of your child. Who (or what) was this child to have been for you?" What followed was a remarkable outpouring of poignant, anguished human sharing that, to this day, serves as the foundation for understanding and working with parents of impaired children.

Parents attach to children through core-level dreams, fantasies, illusions and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on ones ability to separate from the lost dream, and to generate new, more attainable, dreams.

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.

Grieving is an unlearned, spontaneous, and self-sufficient process. It consists of states of feeling that provide the opportunity for self-examination, leading to both internal and external change. The grieving states that facilitate separation from a lost dream are as follows: denial, anxiety, fear, guilt, depression, and anger. The word "states" is used, instead of "stages," to emphasize grieving is not a step-by-step process that evolves through discrete stages. This depiction of what a parent goes through is a presentation of theory, not irrefutable fact. It is meant to help people find their own ways of dealing with the unspeakable. I look at it as a map, not a recipe. A recipe tells people what to do if they desire a particular result. A map, on the other hand, is one person's partial impression of reality that can be used by another to help them get to where they wish to go.

When the theories of grieving are used as a recipe to produce acceptance, two false premises are inflicted on parents. The premise that grieving should move through a specific order is flatly inaccurate. A consistent pattern is not evident in people dealing with loss! Worse, when people believe that they supposed to grieve in a certain way, they often end up thinking they are doing it wrong. Secondly, the concept of acceptance is totally unfounded. In almost twenty years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failure for not being able to attain it. Any use of grieving theory as a recipe is strongly discouraged.

Though the feeling states of grieving do not adhere to any strict order, there is a loose pattern that can be detected. Denial is always first, but may re-emerge again an again, as often as the parent needs to experience it. Anxiety generally follows denial, but it can follow other states as well. It is not uncommon for two or more feeling states to be experienced at the same time. Different families are more or less comfortable with showing certain feelings while discouraging others. In short, each person who goes through the grieving process experiences each of the feeling states, but does so in their own unique manner and order.

It is clear that this spontaneous, unlearned grieving process is central to the well being of the child and parent alike. It is the only way that one can separate from a lost, cherished dream. Many people do not make it. They have their own dreams shattered by their child's disability and collapse emotionally under the assault. Resisting the grieving process, they hold feelings in, blame self or others, become embittered, dependent, or even bizarre in their interactions. They can range from the selfless crusader to the deserter, from the alcoholic to the workaholic, from the outrageously high-strung to the person who barely moves or talks. However they manifest their stuckness, these are the people who have become worse, not better, in response to loss. These are the people who could not or would not experience the feelings of grieving. Many of them resisted the process because of their subculture (their family, neighbors, church, schools, or friends) sent out a consistent message: the feelings of grieving are not acceptable! Others foundered because they were stuck emotionally before they had their impaired child. Regardless of background, people become worse if they resist experiencing and sharing the spontaneous feelings of grieving. Each feeling state, no matter how negative, serves a specific and helpful function. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.

The Feeling States of Grieving

Denial

People who deny are considered stupid, obstructionist, dull or deliberately irritating by many who have to deal with them. None of that is true. Parents of impaired children manifest denial as a normal course of trying to deal competently with loss. It is impossible to live life fully while maintaining an awareness of the awful things that can happen to other people. Most people routinely shield themselves with such thoughts as: "The terrible things that happen to other people can't happen to me, because…" This system works fine as long as nothing terrible happens, but when it does, no one is prepared to deal with it. This is where denial in the service of grieving comes in. Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.

Anxiety

When a person loses a dream that is central to their being, they are forced to make major changes within themselves and within their environment. To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values, and beliefs, as well as altering day-to-day routines. Such changes requires a great deal of energy. Anxiety mobilizes the energy needed to make these changes. Further, it gives focus to that energy so that the changes can be actualized. Anxiety is the inner source of the need to act.

Anxiety is generally seen as hysterical, inappropriate, and unacceptable. The culture's message is clear. As a rule we advise anxious people to "calm down," to take meditation, or to use alcohol as a "solution" for the "problem" of anxiety. The un-solutions keep the parent from changing and often make things worse for all concerned. Realities must be faced, stressful as they might be. It does not take long for most parents to become aware that they, not some professional, are their child's medical, education, and therapy managers, even though they may have minimal knowledge of these areas. That alone should drive home the urgent need for energies to be mobilized and focused by the crucial feeling of anxiety.

Fear

As anxiety mobilizes people to deal with change, fear is a warning that alerts the person to the seriousness of the internal changes that are demanded. One's sense of balance and order are dramatically challenged when one confronts a meaningful loss. The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult.

Significant losses produce a profound sense of abandonment and vulnerability. We have a number of sayings to cope with this level of fear, e.g., "It is far better to have loved and lost, than to have never loved at all." Each person must find their own words to confront the sense of abandonment and vulnerability generated by a significant loss. Most parents experience the fear of vulnerability about having more children after they have had an impaired child, or about "over protectionism," the gutwrenching fear of permitting their impaired child to do anything that feels risky. Given the ways that this part of grieving is manifest, it should not be difficult to see that fear is the medium that encourages the struggle to reattach, to love again in the face of loss.

Guilt

Parents of impaired children manifest guilt through the normal course of grieving and are often criticized for doing so. Guilt is a feeling state that has become so identified with being neurotic that people feel guilty about feeling guilty. Since sharing such feelings often evokes negative judgments, it can be difficult for a sophisticated parent to talk about guilt freely. On the surface, guilt-ridden people may appear not only neurotic, but superstitious, ignorant and primitive. They are often viewed as unpleasant, uncomfortable people to be with and therefore are dismissed or treated harshly by friends, family, and professionals.

Generally parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child's handicap. Their story is often accurate and, on the whole, persuasive. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child's impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child's impairment is punishment for a past inappropriate thought, feeling, or action. One of the more common "guilt thoughts" is regretting the pregnancy sometime during gestation. When something goes wrong after that thought occurs, "it's all my fault" becomes a natural outcome. Lastly, guilt can be expressed through the parent's belief that good things happen to good people, and bad things happen to bad people. Because, they have an impaired child, they must be bad people and consequently feel shame and guilt. How can such painful explanations of tragedy be useful to bereaved individuals? Simply by being explanations. Guilt "explains" the unexplainable.

Human beings begin to question "why" of things from very early on in their lives. What are the rules, which govern the way of things: cause and effect as well as right and wrong? A most important "why" concerns how one's "right" or "wrong" actions effect one's life. What difference does it make that a person is moral, ethical, legal, caring, ambitious? How is that one does or does not influence the events of one's life? Some of us found early and easy answers to these questions and have not considered them since. After a loss, such questions cannot be answered in ordinary fashion. Rather, they must be addressed through the kind of grief-related struggles addressed here. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. The order of things is totally upset when an innocent child suffers. The parent experiences deep pain, pain that can be used to reorder the rightness of the world. Guilt is the feeling state that facilitates this struggle to reorder. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.

Depression

A common response to loss often is characterized by profound and painful sobbing. Parents report that at times it feels as though the tears will never stop. There is a rest, but then for no apparent reason, waves of despair and anguish wash over the parent once more. Between the tears, one can sit alone, staring silently. Those periods of silence can last well beyond the periods of tears. The thoughts of depression take over, thoughts like: "What's the use of trying, it's all over," or "Nothing I do matters, because nothing will change what has happened to my child!" Depression is subtly rejected and judged as pathological by much of our culture. When people display such feelings, they are often told to "cheer up", given medication, or offered distractions. Such responses are inappropriate, for depression is part of normal, necessary, and growthful grieving. It attends to another aspect of a basic human struggle that loss stirs.

As we mature, we develop and modify our definitions of the following words: competence, capability, value and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are OK or not. What criteria does a person have to meet to feel like a competent parent, a capable worker, a valued friend, or a strong person? Each person determines these standards privately, even secretly. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value, and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can't use the measures of her peers, like having a daughter graduate from college, or become homecoming queen. What is the worth of a father who cannot "fix" what is broken in his impaired son? Out of this struggle of defining one's worth come the frightening feelings of helplessness, hopelessness, and haplessness. Faced with loss, a parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopelessness), and unable to believe that their lives are touched by good luck (hapless).

Such feelings are terrifying for both parents and those are around them. For that reason, it is hard to see that depression is a normal and necessary part of the grieving process. Depression is the medium that helps parents come to new definitions of what it takes to be a competent, capable, valuable and strong people, even though their child has impairments that they cannot cure.

Anger

Anger, for many people, is the most disconcerting of the feeling states. It too is a natural and necessary part of the grieving process. Parents feel anger at the harm done to their child and the shattering of their dreams. When one encounters a significant loss, it is likely that one's internal sense of justice is severely challenged. To continue to trust in the world, one must have a sense of justice that confirms an orderliness and fairness to the way the world works.

A parent can righteously demand to know why he or she has an impaired child: "Why me, why not you!" Implicit in the question is the notion that here must be good reason that such a things happens to one parent and not to another. A parent's concept of justice, like value and worth, is another unique product of that individual's thinking and development. When confronted with the traumatic loss of a dream, that internal sense of justice is violated. Crying out in the face of injustice, the parent develops new ways to look at justice in the world. "What, after all, is fair, if this can happen?" Anger is the medium through which a parent redefines fairness and justice. It integrates new beliefs within the deepest emotional levels of the grieving parent.

Unfortunately, anger is an emotion that is actively rejected by the culture at large and by people closest to the parent. The angry parent experience's rejection by others, confusion about feeling anger and acting out the feeling, the feeling of being out of control. All of this makes it very difficult for this important feeling to run its course.

Anger also poses other dilemmas. Unlike the other feeling states of grieving, anger is directed toward someone or some-thing. Who (or what) is the object of parental anger? This question deeply distresses most parents, because the honest answer is often so troubling that many people avoid asking themselves the question. The unacceptable answer, of course, is that the impaired child is the object of anger. After all, who has entered this parent's life, disrupted it, caused immeasurable pain, and drained the parent's time, energy, and money.

Most parents were raised to believe that feeling and expressing negative feelings about one's child is taboo. "The child never asked to be handicapped, let alone to be born. How can one be reasonably angry at this child?" If the child is blameless, then it must be unreasonable to feel anger toward the child, even though one does! The conflict between what parents feel and what they permit themselves to express can cause a return to denial. Another outcome of this conflict is that the parent can displace the anger onto others. Spouses, non-impaired siblings of the impaired child, and professionals are all possible targets of this displaced anger.

When considering the feeling states of grieving, especially the feeling state of anger, logic and reason are irrelevant. Where is the logic behind cursing a rug that one has just tripped on? What is the purpose of kicking a flat tire? What good does it do to admonish anyone after they have already done the wrong thing? Expressing simple anger clears the way to getting on with the task at hand. Expressing anger opens the way to address the meaning of justice (though enacting angry behavior sidetracks the parent from the task at hand). While there is no logic, there is purpose and function to the expression of angry feelings. As events occur that violate one's sense of justice, the outrage must be expressed. Those expressions help to redefine one's concepts of fairness and injustice.

The parent of an impaired child separates from dreams that were shattered by impairment through grieving. Denial, anxiety, fear, depression, guilt, and anger all emerge. If they are shared with other people, these feelings help parents grow and benefit from what might be the worst tragedy of their lives. Grief must be shared deeply and fully until the underlying issues are revealed. The reopening of these issues changes the parents' worldview. New perceptions of themselves and their world serve as a solid foundation for coping with the disability and for personal growth. Yielding to the grieving process helps parents find the inner strength and external support needed to face profound loss; to mobilize and focus the energies needed to change their lives; to reattach to new dreams and loves in spite of feeling abandoned and vulnerable; to redefine their criteria for competence, capability, value, and potency; to reassess their sense of significance, responsibility, and impact upon the world around them; and to develop new beliefs about fairness and justice that makes the world a tolerable place to live, even thought terrible losses can occur. The culturally rejected feeling states of denial, anxiety, fear, depression, guilt, and anger may be used in surprisingly positive ways when the feelings are fully shared.

Perhaps you can now see why I think that experiencing and sharing the pain is the solution, not the problem. Through my life I have experienced many losses. For many years I dealt with these losses by stifling feelings, work-aholism, toughing-it-out, and innumerable other ways that kept me from experiencing what had happened to me. I became one of the "walking wounded" that I was committed to helping. Ironically, it was not until I myself had a child with impairments that I began to take advice that I had so freely given to other parents. I started to yield to the natural and necessary process of grieving. Like everyone else, I discovered that only now am I growing with the impact of the loss. I will continue to grieve and to grow as my child and I develop and experience new losses and new strengths.

Dr. Ken Moses is a psychologist who has devoted his career to working with the issues of growth in the light of profound loss. Born into a post-holocaust, German-Jewish family in the early 1940’s, he grew up observing his family struggle with the ravages of death, disability, dislocation, and prejudice. Dr. Moses pursued his study of the relationship between human development and grieving through his doctorate work at the Illinois Institute of Technology, and later through a faculty appointment at Northwestern University . There, he developed his approach to the dynamics of grieving that combined developmental theory with an existential view of the human condition. He brought this understanding to the dynamic of grieving in general, and to the losses experienced by parents of children with disabilities in particular. After ten years in this field, Dr. Moses, himself, became the parent of a child with special needs.

For the past 35 years, Dr. Moses has presented to universities, medical schools, hospitals, medical centers, special education cooperatives, school systems, parent organizations and regional and national professional organizations. As a teacher, Dr. Moses presents the complex dynamics of attachment, loss, and its impact on development, in an accessible and engaging way. His Transition Therapy counseling approach can have a powerful impact on the lives of people dealing with profound loss, and has proven useful to caregivers across the spectrum of helping professionals.

Ken Moses' private practice centers on issues of crisis, trauma, grieving and loss. He provides individual, couple & family psychotherapy consults either in person or by telephone. For inquiries regarding the private practice only, please call: (847)328-7774. You can find Resource Networks, Inc. website at http://www.itsenuf.org/index.html

If you have recently learned that your child is developmentally delayed or has a disability, which either is or is not completely defined, this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.

When parents learn about any difficulty or problem in their child's development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated - and so confused that I recall little else about those first days other than the heartbreak. Another parent described this event as a "black sack" being pulled down over her head, blocking her ability to hear, see and think in normal ways. Another parent described the trauma as "having a knife stuck" in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents' minds and hearts when they receive any bad news about their child.

Many things can be done to help a parent through this period of trauma. That is what this paper is all about. In order to talk about some of the good things that can happen to alleviate the anxiety, let us first take a look at some of the reactions that occur.

Common Reactions

On learning that their child may have a disability, most parents react in ways that have been shared by all parents before them who have also been faced with this disappointment and with this enormous challenge. One of the first reactions is that of denial - "This cannot be happening to me, to my child, to our family." Denial rapidly merges with anger, which may be directed toward the medical personnel who were involved in providing the information about the child's problem. Anger can also color communication between husband and wife or with grandparents or significant others in the family. Early on, it seems that the anger is so intense that it touches almost anyone, because it is triggered by the feelings of grief and inexplicable loss that one does not know how to explain, nor how do deal with.

Fear is the most immediate response. People often fear the unknown more than they fear the known. Having the complete diagnosis and future prospects can be easier than uncertainty. In either case, however, fear of the future is common emotion: "What is going to happen with this child when he is five years old when he is 12, when he is 21? What is going to happen to this child when I am gone?" Then other questions arise: "Will he ever learn? Will he ever go to college? Will he or she have capability of loving and living and laughing and doing all the things that we had planned?"

Other unknowns also inspire fear. Parents fear that the child's condition will be the very worst that it possibly could be. Over the years, I have spoken with so many parents who said their first thoughts were totally bleak. One expects the worst. Memories return of persons with disabilities one has known. Sometimes there is guilt over some slight committed years before toward a person with a disability. There is also fear of society's rejection, fears about how brothers and sisters will be affected, questions as to whether there will be any more brothers or sisters in this family and concerns about whether the husband or wife will love this child. These fears can almost immobilize some parents.

Then there is guilt - guilt and concern about whether the parents themselves have caused the problem: "Did I do something to cause this? Am I being punished for having done this? Did I take care of myself when I was pregnant? Did my wife take good enough care of herself when she was pregnant?" For myself, I remember thinking that surely my daughter had slipped from the bed when she was very young and hit her head, or that perhaps one of her brothers or sisters had inadvertently let her drop and didn't tell me. Much self-reproach and remorse can stem from questioning the causes of the disability.

Guilt feelings may also be manifested in spiritual and religious interpretations of blame and punishment. When they cry, "Why me?" or "Why my child?" many parents are also saying, "Why has God done this to me?" How often have we raised our eyes to heaven and asked: "What did I ever do to deserve this?" One young mother said, "I feel so guilty because all of my life I had never had a hardship and now God has decided to give me a hardship."

Confusion also marks this traumatic period. As a result of not fully understanding what is happening and what will happen, confusion reveals itself in sleeplessness, inability to make decisions and mental overload. In the midst of such trauma, information can seem garbled and distorted. You hear new words that you never heard before, terms that describe something that you cannot understand. You want to find out what it is all about, yet it seems that you cannot make sense of all of the information you are receiving. Often parents are just not on the same wavelength as the person who is trying to communicate with them about their child's disability.

Powerlessness to change what is happening is very difficult to accept. You cannot change the fact that your child has a disability, yet parents want to feel competent and capable of handling their own life situations. It is extremely hard to be forced to reply on the judgments, opinions and recommendations of others. Compounding the problem is that these others are often strangers with whom no bond of trust has yet been established.

Disappointment that a child is not perfect poses a threat to many parents' egos and a challenge to their value system. This jolt to previous expectations can create reluctance to accept one's child as a valuable, developing person.

Rejection is another reaction that parents experience. Rejection can be directed toward the child or toward the medical personnel or toward other family members. One of the more serious forms of rejection, and not that uncommon, is a "death wish" for the child - a feeling that many parents report at their deepest points of depression.

During this period of time when so many different feelings can flood the mind and heart, there is no way to measure how intensely a parent may experience this constellation of emotions. Not all parents go through these stages, but it is important for parents to identify with all of the potentially troublesome feelings that can arise, so that they will know that they are not alone. There are many constructive actions that you can take immediately, and there are many sources of help, communication and reassurance.

Seeking the Assistance of Another Parent

There was a parent who helped me. Twenty-two hours after my own child's diagnosis, he made a statement that I have never forgotten: "You may not realize it today, but there may come a time in your life when you will find that having a daughter with a disability is a blessing." I can remember being puzzled by these words, which were nonetheless an invaluable gift that lit the first light of hope for me. This parent spoke of hope for the future. He assured me that there would be programs, there would be progress and there would be help of many kinds from many sources. And he was the father of a boy with mental retardation.

My first recommendation is to try and find another parent of a child with a disability, preferably one who has chosen to be a parent helper, and seek his or her assistance. All over the United States and over the world, there are Parent-Helping-Parent Programs. The National Information Center for Children and Youth with Disabilities (NICHCY) has listings of parent groups that will reach out and help you. If you cannot find your local parent organization, write to NICHCY to get local information.

Talk with Your Mate

Over the years, I have discovered that many parents don't communicate their feelings regarding the problems their children have. One spouse is often concerned about not being a source of strength for the other mate. The more couples can communicate at difficult times like these, the greater their collective strength.

If there are other children, talk with them, too. Be aware of their needs. If you are not emotionally capable of talking with your children or seeing to their emotional needs at this time, identify others within your family structure who can establish a special communicative bond with them. Talk with significant others in your life - your best friend, your own parents. For many people, the temptation to close up emotionally is great at this point, but it can be so beneficial to have reliable friends and relatives who can help carry the emotional burden.

Do Not Be Afraid to Show Emotion

So many parents, especially dads, repress their emotions because they believe it to be a sign of weakness to let people know how badly they are feeling. The strongest fathers of children with disabilities whom I know are not afraid to show their emotions. They understand that revealing feelings does not diminish one's strength.

Learn to Deal with Bitterness and Anger

Ultimately, bitterness and anger will hurt you a great deal more than they will affect those toward whom the anger is directed. It is very valuable to be able to recognize your anger and then let go of it. It is understandable that parents will be bitter and angry and disappointed to learn that their child has a serious problem. When you realize that these negative responses tend to hurt you and make you less effective with your child, you can decide to do something about them. Life is better when you are feeling positive. You will be better equipped to meet new challenges when bitter feelings are no longer draining your energies and initiative.

Adopt a Grateful Attitude

It is hard to remain angry when one is grateful. Sometimes, when everything seems to be going wrong, it is difficult to find a cause for gratitude. However, in the scheme of things, if you look around and count your blessings, perhaps positive feelings can overtake the more negative ones.

Maintain a Positive Outlook

A positive attitude will be one of your genuinely valuable tools for dealing with problems. There is truly always a positive side to whatever is occurring. For example, when my child was found to have a disability, one of the other things pointed out to me was that she was (and still is) a very healthy child. The fact that she has had no physical impairments has been a great blessing over the years; she has been the healthiest child I have ever raised.

Keep in Touch with Reality

To stay in touch with reality is to accept life the way it is. To stay in touch with reality is also to recognize that there are some things that we can change and other things that we cannot change. The task for all of us is learning which things we can change and then set about doing that.

Remember that Time is on Your Side

Time heals many wounds. This does not mean living with and a raising a child who has problems will be easy, but it is fair to say that, as time passes, a great deal can be done to alleviate the problem. Therefore, time does help!

Find Programs for Your Child

Even for those living in isolated areas of the country, assistance is available to help you with whatever problems you are having. While finding programs for your child with a disability, keep in mind that programs are also available for the rest of your family, too.

Rely on Positive Sources in Your Life

One positive source of strength and wisdom might be your minister, priest or rabbi. Another may be a good friend or a counselor. Go to those who have been a strength before in your life. Find new sources that you need now.

A very fine counselor once gave me the recipe for living through a crisis: "Each morning, when you arise, recognize your powerlessness over the situation at hand, turn this problem over to God, as you understand Him, and begin your day."

Whenever your feelings are painful, you must reach out and contact someone. Call or write or get into your car and contact a real person who will talk with you and share that pain. Pain divided is not nearly so hard to bear as is pain in isolation. Sometimes professional counseling is warranted; if you feel that this might help you, do not be reluctant to seek this avenue of assistance.

Take One Day at a Time

Fears of the future can immobilize one. Living with the reality of the day which is at hand is made more manageable if we throw out the "what if's" and "what then's" of the future. Good things continue to happen each day. Take time to "smell the roses."

Learn the Terminology

When you are introduced to new terminology, you should not be hesitant to ask what it means. Whenever someone uses a word that you don't understand, stop the conversation for a minute and ask the person to explain the meaning.

Seek Information

Some parents seek virtually "tons" of information; others are not so persistent. The important thing is that you request accurate information. You should not be afraid to ask questions, because asking questions will be your first step in beginning to understand more about your child. Learning how to formulate questions is an art that will make life a lot easier for you in the future. A good method is to write down your questions before entering appointments or meetings, and write down further questions as you think of them during the meeting. Get written copies of all documentation from physicians, teachers and therapists regarding the your child. It is a good idea to buy a three-ring notebook in which to save all information that is given to you. In the future, there will be many uses for information that you have recorded and filed; keep it in a safe place. Again, remember to always ask for copies of evaluations, diagnostic reports and progress reports.

Do Not Be Intimidated

Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You do not have to apologize for wanting to know what is occurring. Do not be concerned that you are being a bother or are asking too many questions. Remember, this is your child, and the situation has a profound effect on your life and on your child's future. Therefore, it is important that you learn as much as you can about your situation.

Take Care of Yourself

In times of stress, each person reacts in his or her own way. A few universal recommendations may help: Get sufficient rest; eat as well as you can; take time for yourself; reach out to others for emotional support.

Avoid Pity

Self-pity, the experience of pity from others, or pity for your child are actually disabling. Pity is not what is needed. Empathy, which is the ability to feel with another person, is the attitude to be encouraged.

Avoid Judgments

During this period, parents may become judgmental about the way people are reacting toward them or toward their child. Many people's reactions to serious problems are based on a lack of understanding, fear of knowing what to say or fear of the unknown. Therefore, others may sometimes react inappropriately, but you need not use too much energy in being concerned over those who are not able to respond in ways that you might prefer.

Keep Daily Routines as Normal as Possible

My mother once told me, "When a problem arises and you don't know what to do, then you do whatever it was that you were going to do anyway." Practicing this habit seems to produce some normalcy and consistency when life becomes hectic.

Remember That This is Your Child

This person is your child, first and foremost. Granted, your child's development may be different from that of other children, but this does not make your child less valuable, less human, less important or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second. If you can relax and take the positive steps outlined, one at a time