know. 38p. - eric · mcnally, diana; niles, nancy; raymond, roberta; russell, candice before you...

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INSTITUTIONSPONS AGENCY

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ABSTRACT

DOCUMENT RESUME

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Clark, Marsha J.; Kendrick, Martie; Chamberlain, Linda;Chesley, Esther; Clement, Stacie; Cummings, Dawn;Henri-Mackenzie, Sue; Labbe, Tonya; MacDonald, Janice;McNally, Diana; Niles, Nancy; Raymond, Roberta; Russell,CandiceBefore You Decide: What Families Would Like Policy Makers toKnow.Maine Univ., Orono. Center for Community Inclusion.Administration on Developmental Disabilities (DHHS),Washington, DC.1997-00-0038p.

90DD0352; 90DD0385Center for Community Inclusion, Maine's UniversityAffiliated Program, University of Maine, 5717 Corbett Hall,Orono, ME 04469-5717.Guides Non-Classroom (055) Opinion Papers (120)MF01/PCO2 Plus Postage.Access to Education; *Accessibility (for Disabled); *ChildRearing; Day Care; *Disabilities; *Educational Needs;Elementary Secondary Education; Employed Parents; *FamilyNeeds; Family Problems; Financial Problems; IntegratedServices; Medical Services; *Parent Attitudes; SocialIntegration; Transportation

This booklet, developed by parents of children withdevelopmental disabilities, is intended to help policy makers understandmajor parental concerns about raising a child with a disability. The specificissues addressed are: (1) the special needs of families with a disabledchild; (2) the right to community integration; (3) the continuingdifficulties in obtaining appropriate care; (4) the continuing difficulty ofobtaining an appropriate public education in the least restricted educationalenvironment, as required by law; (5) the need for better integration ofavailable services; (6) the continuing obstacles despite accessibilityrequirements under the law; (7) special medical care problems; (8) thecontinuing problems with employers despite relief offered by the Family andMedical Leave Act of 1993; (9) finances, a constant source of stress to thesefamilies; (10) the continuing lack of accessible transportation services; and(11) the future, the dream of a future where every child is happy, loved, andsuccessful. Each section contains factual information about the issue, ananalysis of how families are typically affected, and quotations by familymembers describing their specific experiences. The booklet concludes withsuggestions for both policymakers and parents. (DB)

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Reproductions supplied by EDRS are the best that can be madefrom the original document.

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Before You DecideWhat Families Would Like Policy Makers to Know

by

Marsha J. ClarkMartie Kendrick

Linda ChamberlainEsther ChesleyStacie Clement

Dawn CummingsSue Henri-MacKenzie

Tonya LabbeJanice MacDonald

Diana McNallyNancy Niles

Roberta RaymondCandice Russell

Maine's University Affiliated ProgramUniversity of Maine

BEST COPY AVAILABLE2

U.S. DEPARTMENT OF EDUCATIONOffice of Educational Research and Improvement

EDUCATIONAL RESOURCES INFORMATIONCENTER (ERIC)

Vhis document has been reproduced asreceived from the person or organizationoriginating it.Minor changes have been made toimprove reproduction quality.

Points of view or opinions stated in thisdocument do not necessarily representofficial OERI position or policy.

This publication is available on audiotape. Upon request this material will be made available in other alternativeformats to accommodate the needs of individuals with disabilities.

In complying with the letter and spirit of applicable laws and in pursuing its own goals of pluralism, the University ofMaine shall not discriminate on the grounds of race, color, religion, sex, sexual orientation, national origin or.citizenship status, age, disability, or veterans status in employment, education, and all other areas of the University. TheUniversity will provide reasonable accommodations to qualified individuals with disabilities upon request.

Before You DecideWhat Families Would Like Policy Makers to Know

by

Marsha J. ClarkMartie Kendrick

Linda ChamberlainEsther ChesleyStacie Clement

Dawn CummingsSue Henri-MacKenzie

Tonya LabbeJanice MacDonald

Diana McNallyNancy Niles

Roberta RaymondCandice Russell

1997

Maine's University Affiliated ProgramUniversity of Maine

Copyright©1997, Center for Community Inclusion, Maine's University Affiliated Program, University of Maine. All rights reserved.

4

Special thanks to Kathy Son for her tireless efforts and insightful advice. Also, thanks toPatricia Enman for proofreading and editing on a very tight schedule.

This monograph was prepared by the Center for Community Inclusion, Maine's University Affiliated Program. TheCenter for Community Inclusion receives funding from the Administration on Developmental Disabilities, U.S.Department of Health and Human Services (#90DD0352 and #90DD0385). The purpose of the Training InitiativeProject, Ensuring Inclusive Communities: Education and Training in Positive Supports for Persons with ChallengingBehavior, is to educate teams of parents, school personnel, and adult service providers about positive supports.

The contents of this book do not necessarily represent the policy or position of the U.S. Department of Health andHuman Services or the University of Maine.

For further information regarding the Training Initiative Project or the Center for Community Inclusion, please contact:

Center for Community InclusionMaine's University Affiliated Program

University of Maine5717 Corbett Hall

Orono, Maine 04469-5717

TEL: (207) 581-1084TT: (207) 581-3328

FAX: (207) 581-1231

This book has been printed on recycled paper.

Before you decide, we want you to know about:

Families Who Have Children with Disabilities 6

Community Awareness 8

Child Care 10

Education 12

Services 14

Accessibility 16

Medical Care 18

Work 2 0

Finances 2 2

Transportation 2 4

A Vision for the Future 2 6

What We Can Do. 2 8

The Authors 2 9

Your decisions on these issues affect our families.

6

Before you decide,

we want you to know

how your decisions

will affect families.

Every child is born into a family. In turn, the family is part ofa greater community. For all families,

the presence of a child brings added responsibilities and demands. Although these obligations can be stress-ful, the child still brings great joy to the family as parents watch the child develop. As the child grows older,

his or her time in the community increases while time with the family decreases. Eventually, it is assumed

that the child will become a contributing adult member of the community.

For families who have children with disabilities, this process is often skewed. The presence of a

disability intensifies all interactions surrounding the child, whether within the family unit or in the commu-

nity. Families may be confounded by medical concerns, the lack of appropriate child care or transportation,and the inability to find needed therapeutic services. They agonize over how they will pay for these services

while balancing the needs of their other children, their spouses, and their jobs. Families may struggle to meet

the unique needs of their children with disabilities often at great physical, emotional, or financial expense.

Families want to raise their children at home, but they may not be able to do so without support. Some

parents fear that they will have to relinquish control or even custody so that their child may receive the

supports and services he or she needs. If custody is given up to the state, and the child is placedoutside of the

home, the expense to the state/community becomes five to eight times greater than when the child remains athome.

Many families who have children with disabilities are not or do not feel part of their community. A

lack of awareness and a reluctance to become involved have contributed to the exclusion of people with

disabilities from community places and events that are commonly frequented by people without disabilities.

4..

NO.

Center for Community Inclusion: Maine's UAP2

8

There are laws (e.g., Americans with Disabilities Act, Individuals with Disabilities Education Act,

Section 504 of the Rehabilitation Act of 1973) and agencies that have been designed to help families who

have children with disabilities. The principles and ideals behind these are fundamentally sound. Families,

however, often feel that the laws and services do not always have the desired impact on the individuals for

whom they were intended. Rather than providing support, agencies can become a source of frustration to

families who struggle to make sense of complicated forms, lack of interagency collaboration, varying

eligibility requirements, and inadequate information.

Parents of children with disabilities are not seeking special treatment for their children. They want

only what other parents and children take for granted: the chance to be an integral part of their communities.

For this to happen, they need to be assured of equal access to all public environments that are afforded them

through federal and state legislation. They need support to achieve what we all wantto live, to learn, and to

love.

Policy makers cannot take away the challenges that families experience, but there are things that they

can do that will make a positive difference in their quality of life. Each piece of legislation and policy must be

evaluated on an individual basis as the needs of each person, with or without disabilities, must be assessed on

an individual basis. An important question for legislators to ask when making a decision is, "Will this assist

people with disabilities to achieve happy, healthy, and satisfying futures?" The way you, our policy makers,

respond to this question will affect individuals with disabilities and their families.

Center for Community Inclusion: Maine's UAPs3

To help you understand what families need, a group of family members decided to share their

experiences. This diverse group of parents met as part of a training on positive supports sponsored by the

Center for Community Inclusion, Maine's University Affiliated Program. The training was funded by the U.S.

Department of Health and Human Services, Administration on Developmental Disabilities. In addition to

learning about positive supports to address the challenging behaviors of their children, parents were offered

the opportunity to work on a group project. They decided to tell their stories to policy makers. These parents

want to help people who may not have experience with disability issues to understand what their lives arelike. Even though you do not know them or their children, every decision you make regarding work, child

care, health care, communities, services, finances, and transportation can have an impact on their lives.

Whether the impact is positive or negative will be up to you. A decision can be made in an instant, but

families must live daily with the consequences of your choice.

The following collection identifies issues that are important to families. The center column contains

factual information about each issue followed by an analysis of how families are typically affected. The family

members' quotes on the borders describe some of their experiences. Each family's experience is different.

Each story becomes a unique part of a mosaic that we hope will provide you with some insight into the joys

and struggles that families who have children with disabilities face daily.

Marsha J. Clark, Ph.D. and Martie Kendrick

A

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Center for Community clusion: Maine's UAP

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All of us have different life-styles,yet we all have a difficult timemaintaining a balance in our lives.There are so many extras going onin our lives, such a high price wepay for trying to do it all.

Stacie

I am the constant, the one whodeals with the meetings, theevaluations, and the professionals.Gramma gets to do the fun stuff.Thank God for Grammas.

Tonya

My sister has had numerouspeople in and out of her home,making her feel like she lives inGrand Central Station. This isextremely difficult because herprivacy is gone. She does itbecause she needs them and sodoes her son.

Linda

I have heard from parents whohave made the decision to havetheir children live outside of thefamily unit. I know that they havedone everything they could beforethey made that decision. It issomething they discussed atlength. The reality is that familieswho do not have children withdisabilities do not have a conver-sation about whether they could,should, or are supposed to beintact. It's assumed.

Sue

It is not easy to make a two yearold and a four year old understandthat I am not only their mother,but that I am also the legal .

advocate for their brother.Tonya

3LST COPY AVAILABLE

Families who have children withdisabilities are like other families.They have the same hopes anddreams for their children. Theywant their children with disabilitiesto remain an integral part of theirfamilies. Their needs, however, are

intensified by the presence of a child with a

disability. While other families are busy in

the pursuits of daily living and fun, families

of children with disabilities must deal

additionally with a variety of doctors,

therapists, insurance personnel, school

staff, social agencies, Medicaid, and more.

Besides being simply a "mom" or a "dad,"

parents must be teachers, therapists, and

case managers. The number of telephone

calls parents must make to assure service

coordination can be daunting. Often,

extended families are unable or unwilling

to assist the family in times of need, simply

because of the child's disability. Sometimes

a relative's judgmental attitude may add to

the stress of an already overwhelmed

parent. Often parents wonder where they

will find the time, energy, and strength to

continue.


I worry about his violent rages. Heis only eight years old and it isbecoming more difficult to setlimits and manage him physically.I worry that he will become tooviolent and will be unable toremain living at home with us.

Janice

There are some members of myfamily who won't take care ofAmanda. Why? Because they arescared of what they don't knowand aren't willing to take the timeto find out. They are missing somuch by not being close toAmanda.

Dawn

We are normal, average parents intough situations. This is how wehave coped or haven't coped. Itdrives me crazy to hear, "You'resuch a special person!" Whatchoice do I have? Should I sendhim to an institution or keep himat home? No brainer: Pm keepinghim home!

Janice

My sister took both of my childrenfor a day. When she returned,she said, "You deserve a medal,how do you do it?" She didn'tmean it negatively, but it didn'thelp me.

Janice

When Matt came out of thehospital, I was crying with afriend. She said, "You don't have .

to keep him at home." I told her,"You don't understand, I do. Weare a family."

12

Sue

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Our family just wants to be treatedequally, not with pity.

Stacie

Because your child has a disabilityyou are made to feel that you arenot smart enough, you don'tprovide enough, you don't listen tothe "right people," you're overprotective, or you're making themsicker. You don't get these feelingsfrom people about your otherchildren.

Dawn

It is so hard to explain to peopleabout Scott's problems.Outwardly, he is a tall, handsomeboy. Inside he has a terribleneuro-biological disorder that hasdevastating effects on our family.

Janice

Every time I hear about someonewith a mental illness committing acrime, my heart skips a beat. Iwonder what kind of services werenot in place to prevent such atragedy.

Sue

I fight constantly to keep Brandonincluded in kindergarten. Somedays it feels like a losing battle. Iget exhausted trying to be hismother, advocate for his needs,and teach the professionals how tocommunicate better with him.

Tonya

Scott would like to have somefriends, but his social skills are soawkward. He often alienates otherchildren with his inappropriatebehaviors.

Janice

In the past, society has excludedand segregated people with disabili-ties. Children and adults with dis-abilities were believed to be betterserved in institutional settings awayfrom their families and communi-ties. As a result, communities beganto believe that people with disabili-ties were intrinsically different fromthe rest of us. They are not. Allchildren benefit from being raisedin a loving family and from beingpart of a supportive community.Current laws (e.g., Americans withDisabilities Act, Section 504 of theRehabilitation Act of 1973) supportthe rights of individuals with dis-abilities to be an integral part oftheir communities. Unfortunately,attitudes have not kept pace with the law.

Parents often feel ostracized when their

children with disabilities are in the com-

munity. Many parents are told that their

children with disabilities cannot participate

in programs that are available to their other

children. Families spend much time and

energy trying to ensure community access

and acceptance.


I would like my daughter to belongto a society that empowers her tofull citizenship, expression of hertalents, and commitment of hergifts.

Roberta

An interesting transformationhappens to me when I enter aroom in my community for ameeting. As I enter the room I ama middle income, intelligent,professional member of thecommunity. When I share that Iam a parent of a child with specialneeds, my credibility decreasesimmediately. I become associatedwith all of the stereotypes aboutparents of children with disabili-tieslow income, doesn't work, ataker, a complainer, someone whodoesn't care about her child, andabove all someone who must havedone something during thepregnancy to cause the disability.As hard as I try, I can nevercompletely regain the level ofstatus and respect I had when Ientered that room.

Dawn

When you have a child with adisability, something as simple assitting down to dinner, groceryshopping, or a doctor's appoint-ment isn't simple anymore.

Stacie

There are always things that theparent just can't take care of alone.We need the assistance of thecommunity, the local educationalsystem, and support services. Weare doing all we possibly can andsometimes we just need help.

Sue

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Respite services are a lifesaver, butit is so hard to keep goodcaregivers. It is a tough job andthe providers don't get paid forfour to six weeks.

Dawn

Our family needs more respitecare and services for us tomaintain Scott in our home. Ihave to be strong, and it is sostressful living with Scott. I amworn down and drained by thedaily stress. It feels like our homeis a psychiatric unit.

Janice

Chris has been receiving homehealth services since he was four.His family has been working onhis self-help skills. It is so difficultfor Christopher to learn new skillswhen there is little consistency inhis life. Home health is so volatile.You can barely count on coverageand staffing. His family neverknows whether Chris will havestaff from one day to the next.

Linda

I have respite, but I'm afraid to useit because I'm not just going toleave my son with anybody. I needto trust the person who will beproviding respite and know thatmy son will be safe.

Tonya

The last three times I've scheduledrespite, the providers were unableto be there or cancelled at the lastminute.

Candice'

I hope to some day see atherapeutic day care for school-age children, not just forpreschoolers.

Tonya

The Americans with Disabilities Act

(ADA) recognizes child carefacilities as public accommodationsand therefore, addresses theirresponsibility to provide servicesfairly and equitably. ADA statesthat child care providers must make"reasonable accommodations."Despite this support from ADA, many

families of children with disabilities

continue to be denied access to child care

facilities. Programs frequently decide that

they are not qualified to care for children

with disabilities. Parents whose children

also have challenging behaviors have a

more difficult time finding child care.

Although a child may initially be allowed to

enter a program, as soon as difficult

behaviors emerge, the parent is told to

remove the child. Respite programs should

function as a temporary relief for families,

but typically respite has a limited

availability of trained caregivers as well as

long waiting lists. This means that many

parents have no break from their children

to do simple tasks such as grocery shopping

nor the opportunity for an evening out.


My son has been without childcare for over four months becausehe requires a one-on-one aide inthe child care setting for safetyreasons. I have spoken with acongressman and members of theChildren's Task Force. I still haveno answers and my son still has nochild care.

Tonya

Ifrespite care people got paidwhat they should get paid, think ofthe wonderful people you couldhire. Good people could quit alower-paying job to do somethingthey love to do.

Esther

I manage to work 20 hours a weekoutside the home and get out oncea week with friends. It takes onechild care center, two teenagebaby-sitters, one respite provider,a few great friends, and agrandmother to take care of mythree children during these times.

Sue

I was called at work by Brandon'schild care provider on his first day,after he had been there for onlytwo hours. This center has thereputation for being one of thebest in the area. I was told to comepick him up and my money wouldbe refunded.

Tonya

Bryce was expelled from the afterschool program for leaving theplayground. He was looking forme because I was meeting with histeacher that day. There was nosuggestion of working together tofind ways to accommodate hisneeds.

16

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The school philosophy, that allstudents are individuals and weshould treat their needs individu-ally, is a facade. When it comes tomy child, their philosophy isn'tindividualized! They're saying it,but it isn't happening.

Stacie

Most teachers want to do what isbest for all of their students. Mostbecame teachers because theyenjoy working with children.Teachers do the best they can, butthe educational system lets themdown, and in turn, children,parents, and communities. Theyaren't given enough training, time,money, or supports. When thishappens, it always comes down tomoney. Why? Aren't childrenworth it?

Nancy

Life is not just complicated athome. It is also a challenge atschool getting the educators tounderstand and accept our childfor who he is, not what he can orcannot do.

Stacie

The one major positive factor inChristopher's life is the schoolsystem. Chris has an aide, Gary,who has been with him for threeyears. Gary has helped to teachChris consistency, social skills, andacademics. Gary has even donerespite care when the home healthagency was unable to. Talk aboutdedication.

Linda

Why do we have to push to get thelaws enforced? Why can't theyjust follow them?

Diana

Free appropriate public education inthe least restrictive educationalalternative is afforded all childrenunder federal (Individuals withDisabilities Education Act, P.L. 94-142 as amended, 20 USC 1401 etseq.) and state law. This means thatchildren with disabilities have the right to

receive the supports and services necessary

for their education in their neighborhood

schools with their siblings and peers. Most

parents of children with disabilities want

their children educated alongside their

non-disabled peers provided that the

necessary supports are in place. Many

children with disabilities are not given this

opportunity. For those who are, many do

not receive the needed supports to make

this educational opportunity successful. As

a result, parents face seemingly endless

meetings, children with disabilities may

receive less than adequate educational

programming, and teachers often feel

imposed upon and unqualified. When

parents offer suggestions, they are often

ignored because they are "just parents."

Typically, when parents have difficulty

with the schools it is because they feel that

people do not abide by the spirit of the law.


16

We had 13 people at a meetinglast week. Most of the accommo-dations my son needed take time,energy, and commitment. No newpeople. No new dollars. Hedoesn't need gold stars, justsomeone to say, "It's nice to seeyou." Sometimes a child's successisn't about dollars and cents, it'sabout the commitment of people.

Sue

The meeting that took place beforeBrandon entered elementaryschool had a total of 17 peoplepresent. This was just to decidewhether he should be included ina kindergarten class and whatservices he needed.

Tonya

As a teacher and coach, I fear thatBrett will be the one child noteacher will want in his class andno coach will want on her team. Ihope it doesn't happen.

Nancy

Annie's teachers have been great.They have been sensitive not onlyto her physical and academicneeds, but also her social andemotional challenges. They havebeen supportive and let her gainindependence at the same time.

Roberta

Parents count on teachers to helpfigure out why their child ishaving difficulty at school. Afterall, they are the professionals. Yetwhen a teacher stands up and says,"The parents and I can't figure outthe troubles this child is having.We need to find out why," theteacher often becomes at' dds withadministrators.

Nancy

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When I try to call a state agency Ihang up the phone and say, "Oh, Ihate calling a state agency!" Itdoesn't matter which one.

Dawn

I have to struggle to get theservices my child needs. If hewere in foster care these sameservices would be mandated.

Sue

You only hear about the abuses ofthe service delivery system. Youdon't hear about those who reallyneed it, are getting it, and areusing it effectively.

Diana

Rolling over, reaching for toys,sitting, speaking, and crawlingwere accomplished with the helpof skilled therapists, specialequipment, and lots of family time.Her first words came in a therapysession, "I did it!" Her first steps?Also in a therapy session at the ageof three and a half.

Roberta

Chris has been involved with theDepartment of Human Servicessince he was 18 months old. Mysister did not find out about theKatie Beckett Medicaid WaiverProgram until he was five. Everysocial worker she spoke withalways asked, "What is it that youneed?" They didn't tell her whatwas available for services for herchild so she could at least choosewhat she deemed appropriate.

Linda

I get exasperated when I am givena brief period of time to get paperwork together and the stateagencies seem to have no concernor concept of time for themselves.

Tonya

There are many state and federalagencies designed to provide sup-port to children with disabilitiesand their families. The array of services

and service providers attempting to meet

the needs of children and adults with

disabilities can be overwhelming. Knowing

where to start is difficult for many families.

When people do begin working with

agencies, they often find it frustrating,

confusing, or ineffectual. Parents typically

experience service delivery systems as cold

and punitive rather than providing the

needed assistance and support. Complex

rules, forms, and procedures that are put in

place to regulate the system often become

obstacles to families and individuals with

disabilities who are trying to get the basic

services they need. Additionally, agencies

typically work in isolation, with no coordi-

nation between agencies. Parents must

then become case managers for their

children to ensure that all of the needed

services are obtained and coordinated. The

systems that were put in place to help

families often become major stressors

instead of supports for them.


Today we buried Michael, the sonof my mother's friend, who wasfound dead in the river at 32 yearsold. Michael had schizophrenia,and there had been no services orprograms to help Michael since heleft high school. His family triedto love and care for him, butunmedicated and unsupported, hewas left blowing in the wind. Hisviolent outbursts made it impos-sible for him to live with them. Icry for Michael's mother and I cryfor the future of my own 8 yearold boy with mental illness. I lighta candle for some hope. I hopethat all the letters, committeework, and calls for services willkeep this kind of nightmare fromhappening to our family.

Sue

Bits and pieces, that's how welearn about the resources andsupports. Sometimes we getinformation after-the-fact. Thenit's too late, and we lose out.Agencies often don't know who orwhat is available to assist us, so westumble around in the dark.

Nancy

When Amanda was an infant wefound services through a friend ofa friend. Child DevelopmentServices (CDS) was the fourth orfifth group we contacted. While itwas known one week afterAmanda's birth that she was blind,we were not referred to CDS andwe did not connect with them tillshe was one year old.

Dawn

I have found out that there is a lotof help out there, but it's all inwho you know. It is very political.

Candice

I want someone to say, "That littlegirl is lucky to have a mom likeher," because I know she wouldn'tbe where she is if I hadn't beenpushing for her. I'll continue topush for her so she can be her best.

Diana

Well-meaning people sometimesplan parties or activities just forchildren with special needs. To us,however, it feels like segregation.Why do they think our childrenwould not enjoy being with theirtypical peers?

Martie

I live with the fears that there willbe inaccessible places, thatmisconceptions and prejudice willstand in Annie's way, and that Iwill not be able to dissolve everybarrier for her.

Roberta

Amanda is in a recreationalprogram. She enjoys the class andhas made many friends. One littlegirl, however, made it very clearthat she did not want anything todo with Amanda. She avoidedAmanda. I can't help but wonderhow this made Amanda feel. Thedifficult part for me was seeingthis happen at such a young ageand knowing that Amanda willhave to deal with this all her life.

Dawn

When I try to get needed servicesfor my child, I must talk in non-feeling, intellectual ways because Ineed people to listen. This isdifficult because I have so manyemotions, and I am just trying tomake a life for my children andmyself.

Sue

In spite of the gains made by theAmericans with Disabilities Act,access continues to presentobstacles for families who havechildren with disabilities. Mostpeople with disabilities face barriers every

day, such as negotiating a set of stairs,

getting to an important meeting, joining a

club, or participating in a recreational

sport. For families who have children with

disabilities, access means more than simply

being able to physically enter a building or

event. Access for them also means having

their children participate in after school

programs, take swimming lessons at the

local pool, join the boy or girl scouts, or

attend Sunday school at their church.

Many parents cannot assume that their

children with disabilities will have access to

these options as readily as their non-

disabled children. Parents are often told

that staff are not trained, there is not

adequate staffing, it will be disruptive to

the other children, or it will take too much

time. The responsibility then falls on the

family to address these issues if access is to

be attained.


22

When it was time for Nina to goto preschool, she was not potty-trained and barely had any verbalskills. It took me 15 tries to find apreschool. It was a devastatingprocess. Most schools simplyrefused Nina, while others hadresponses such as, "How muchwill she take away from the otherkids?" and "How important is itfor us to understand what she issaying?"

Diana

Our local community center hasno wheelchair ramp. Our localgeneral store has wheelchairaccess only to the take-out windowwhich is closed all winter.

Candice

I learned quickly not to share thatAmanda has special needs untilafter potential providers have mether. Once people meet Amandathey realize that including herdoesn't have to be thatcomplicated.

Dawn

I can truly say that everyone whotouches the life of an individualwith a disability can make apositive or negative impact on thefuture of that individual. Thechoice is theirs to make. A littleeducation, understanding, andcompassion go a long way.

Nancy

Finding child care is a nightmare!I knew adults discriminatedagainst other adults, but it nevercrossed my mind that the samecruelty and close-mindednesscould be displayed by adultstoward children.

Dawn

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When Nina was two years old, shewas extremely frustrated and criedoften. She had no verbal skills atall. Our doctor said she was thevictim of the dreaded fourth childsyndrome. In other words, wewere doing everything for her. Hesuggested holding her drink awayfrom her until she attempted tomake the "d" sound. I did thisonce: Nina became so angry andconfused she just sat in the cornercrying. I was angry at the doctorfor suggesting such an inhumanething and was even angrier withmyself for following hisinstructions. Eventually, we foundsomeone who put a name on whatNina had oral and verbaldyspraxia. It's like having a strokeand knowing what you want tosay, but not being able to talk.

Diana

The cost of medical care can beastronomical. We belong to aninsurance program that gives us aprescription card becausemedications can easily cost wellover $100.00 a month. On top ofthis, there is the cost of doctor'sappointments, illnesses, accidents,and the other "normal" medicalexpenses we incur.

Nancy

One night when Bryce was two, hehad a fever of 106. 1 rushed him tothe hospital and found out that hehad a kidney infection. I was toldthat he should have beencathertized since birth. His kidneyswere damaged. I was angry atmyself for not knowing. I wasangry at the doctors for notrealizing this sooner.

Candice

It is important to most people tohave a trusting relationship withtheir primary care physician. Forparents of children with disabilities, it is

critical. Finding competent pediatricians,

neurologists, or psychiatrists who can work

effectively with families and children with

disabilities can be challenging. While

parents may begin questioning if there is a

problem when a child is still young,

physicians often are reluctant to make a

diagnosis. Physicians may take a wait-and-

see attitude, minimize parent's concerns, or

even imply that the parent is doing

something wrong. Many physicians have

never seen a child with Rett syndrome,

Cornelia de Lange syndrome, Fragile X

syndrome, or sensory integration

dysfunction. Lack of appropriate diagnoses

prevents many children from receiving

essential services. To find physicians with

the required expertise, parents must

frequently travel great distances. This takes

time, money, energy, and perseverance.

Parents also need access to up-to-date

medical information and research so they

can make informed decisions about their

child's health.


I am still amazed at how many ofus were raised to believe thatdoctors are "gods." We believedwhat they said without question. Ibelieved what a doctor said eventhough she had no factual basis. Ithas taken numerous experienceswith a variety of professionals tolearn that doctors, therapists, andall professionals are just people.Some are in the job only for thepaycheck, and some for the rightreasons. Some love children, whilesome do not. My job is to pull thebest team of professionals togetherto care for my daughter.

Dawn

When Brett was being diagnosedwith Attention-Deficit/Hyperactivity Disorder (ADHD),we were told to try medication tosee if it helped. The physicianwasn't sure if Brett had ADHD. Iwasn't comfortable with puttinghim on medication before we weresure of the diagnosis. Fortunately,he did send me to someone whoknows about ADHD. There aren't ahuge number of doctors withexpertise in ADHD, let alone closeto where we live.

Nancy

Our son has been so difficult tomanage with medications. It isvery scary for Scott. He has beensuicidal and violently out ofcontrol. We see the best doctors,but there are no easy answers.

Janice

Adam's physician has shared withme that he has a nephew withautism. Naturally, he has anunderstanding of what our familyis going through.

Stacie

Being a working parent is difficultin the best of situations. I have anexcellent employer. For the firsttwo years of Amanda's life I wasable to work some of the time athome, only going to the office afew days a week. People said I hadit so easy. It wasn't. I was dealingwith Amanda's issues, taking herto endless appointments, and thenworking late hours to make upmissed time. More was expectedof me at work because I wasn't inthe office.

Dawn

I get tired of people asking me,"What do you do for work?" I"work" 24 hours a day, seven daysa week so that my son may have afuture. Plus, I raise his twoyounger siblings. I am learning tosay, "I am a professional motherand an advocate for my child. Ijust do not get paid."

Tonya

Thank goodness for employerswho are family oriented. It takesso much pressure off of me. WhenI feel the support given by myemployer around family issues, Iwork harder for them.

Nancy

A man's work is seen as moreimportant. When it is theirfather's weekend and he has tostay home with the children, hisco-workers ask, "Why aren't thekids with their mother? Why doyou have to baby-sit?" Myresponse has been, "You are not ababy-sitter, you are their father."There is an ignorance in theworkplace surrounding a father'sresponsibility to his children.

Tonya

The Family and Medical Leave Act of

1993 requires employers with 50 ormore employees to offer workers,who have been employed for at leasta year, up to 12 weeks of unpaidleave over the course of a year.Employees may use this leave for thebirth or adoption of a child, to carefor a seriously ill relative, or toundergo treatment for their ownserious illness. This Act offers hope, but

for most families of children with

disabilities, its scope is too limited. For

those who are employed, many work for

small businesses and therefore, the Act does

not apply to them. For many, the possibility

of employment is not even available

because there are few jobs that will grant

the flexibility necessary to enable parents to

meet their parenting obligations. Parents

must balance work with doctors'

appointments, therapy sessions, school

meetings, illnesses, and lack of appropriate

child care. Few employers will indefinitely

tolerate an employee, even a good one,

whose chronic family issues make him or

her unreliable or preoccupied.

Center for Community Inclusion: Maine's UAP20o: n

I wonder how I can get a full-timeteaching job knowing that Brycemay need another surgery and beout of school for months. It's not agood way to start a new job.

Candice

I would love to work full-time at ajob where I made a living wage,had adequate health care, and hadthe flexibility to advocate for allthree of my children. Matt's pre-existing conditions make itimpossible for us to get what heneeds without Medicaid.

Sue

Flex-time would be wonderful ifwe all had it. We all have had touse our vacation time to take ourchildren to medical appointmentsor for meeting_ s with schoolpersonnel.

Dawn

My sister and I work for a greatcompany, where the employer isreally understanding. They knowthat she may be late coming towork because it often takes herextra time to get her son ready forschool. She gets a lot of flack fromthe co-workers who say, "She hasspecial privileges." Sometimes thecompany is okay, but the co-workers aren't understanding.

Linda

I arrive late, leave early, or don'teven go to work on an average ofone day a week due toappointments for my children.Some people think that means Ihave it easy, but I also work latetwo or three nights a week to"make up" the time. Not a nightor weekend goes by without medoing some work at home.

Dawn

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We are lucky to have very goodhealth insurance. Annie'stherapies, equipment, and medicaltreatment are costly. We aregrateful that we can makedecisions based on what she needsrather than on cost.

Roberta

My insurance company wasmaking me pay a spend down thatI couldn't afford. I had to boil andreuse Bryce's catheters becausethey were so expensive. Theboiling would make them swelland then they were too big forhim. I swallowed my pride anddesperately started calling on thephone, looking for help. A socialworker at the hospital finally gaveme some information that savedmy sanity and perhaps Bryce'skidneys.

Candice

I know our family needs to meetwith a counselor to help us dealwith all of the issues related to fourpeople in the same family withADHD who love each other. At thispoint, it is on hold because I don'tknow where the money will comefrom. It isn't covered by ourinsurance. We make do as best wecan. It often is a matter of whichbill is highest on the priority list thispay period. We both have collegedegrees in marketable areas ofstudy. We should be able to get thecounseling our family needs.

Nancy

Why is money always the firstissue? Shouldn't our primaryinterest be what is best for thechild?

Dawn

Finances are an issue for all,whether it is personal finances, thefinances of a state agency, or anational budget. Everyone mustdetermine how best to spend limitedresources. Both individuals andagencies may find themselves in thedifficult position of having toprioritize even basic necessities.Financial issues are a constant source of

stress for families with children with

disabilities. Services, therapies, and

equipment needed for a child with a

disability are expenditures not typically

associated with raising a child. These

unexpected expenses may place undo

financial burden on families, and often are

not covered by insurance or Medicaid.

When families do seek help dealing with

expensive medical issues from programs

like Medicaid or private insurances, they

can usually expect to make many phone

calls, face delays in services, or deal with

denial of services. Parents are often

required to justify the child's need for

expensive services or therapies to people

who have never met the child.

Center for Community Inclusion: Maine's UAPBEST COPY AMLAikat-, 282

When we first started to look forservices, our initial struggle waspayment. Who would accept myinsurance? At anywhere from$100 to $160 per hour, I certainlycouldn't afford the services thatAmanda so desperately needed.Basing the selection of a therapiston which insurance they take isnot a good way to make thedecision.

Dawn

I have made a conscious decisionto survive on my son's SocialSecurity Income and child support.I was on Aid to Families withDependent Children for ninemonths and hated the degradationand humiliation of state assistance.Now I shop at Goodwill and livewithin my financial means.

Tonya

Amanda's therapies cost over$2,000.00 per week! Expensive?Yes. A lot for one little girl? Yes.Is it helping? Yes. She isdeveloping by leaps and bounds.It is sad and scary that her futureand the degree to which she canbe a productive member of societyis so directly related to how muchmoney is available for her.

Dawn

I know once Amanda starts school,there will be a struggle to continueto have her see the speech andlanguage therapist who knows herand who works well with her.Instead, the school will prefer thatshe see the therapist on staff. Itwould cost more for the school tosend her to her current speech-language therapist. Why shouldAmanda lose because of this?

Dawn

Tra

nspo

rtat

ion

Currently, to meet Amanda'sneeds, she travels a lot. She has 13therapy sessions per week andattends preschool 40 minutesaway, four mornings a week.

Dawn

I now transport Brandon after thelocal transportation companydrove off while he was stillstanding in the middle of the road,did not properly seat belt him inthe vehicle, and "lost" him for ahalf hour. During that time, Ifrantically called the preschool,the child care center, his grand-mother, and the transportationcompany to see if they had locatedmy child. I began transportinghim with his two younger siblingsin tow, five days a week, sometimestwo to three appointments a day.

Tonya

I have been to 14 specialists sinceMatt was born. None have everagreed on a diagnosis orprognosis. I research, read, andchart symptoms. Not a week goesby that I don't travel one houreach way fora 15 minuteappointment with medicalpersonnel who can help develop atreatment plan that fits our day-to-day life.

Sue

Bryce rides the regular school busto school unless he needs hiswheelchair. Kids have beenteasing him on the bus about hisdisability.

Candice

It has been hard to find and keepgood drivers who we can trust.

Dawn

The availability of transportation,both public and private, is taken forgranted by most people. Under theAmericans with Disabilities Act,public buses purchased after 1990must be accessible to individualswith disabilities. Public rail systemsmust have one accessible car pertrain. Unless families live in or near

major cities accessible transportation is not

typically an option. Because many children

with disabilities need access to specialized

therapies and physicians who are located at

great distances from their homes, parents

must transport them. Parents must allocate

extra time and/or money for transporta-

tion. Even when public transportation is

available and accessible, safety is a concern.

Most drivers have not received training

regarding specific issues related to the

disabilities of the children they are

transporting, and often cannot sufficiently

supervise children to keep them safe. Some

parents are eligible to receive

reimbursement for their transportation

expenses, but the fee is minimal and the

paperwork is prohibitive.

Center for Commuiiity Inclusion: Maine's UAPV24

I have to call ahead, get pre-approval, fill out forms, and collectup to six pages of paperwork to get11 cents a mile reimbursementwhen I take the children tomedical appointments. This isridiculous. Often, it's just notworth it.

Sue

We drive to Bangor, Portland, andBoston for medical appointments.We also drive almost 100 miles onthe weekends to wheelchairbasketball practices and games.

Candice

The bus is too overwhelming aplace for Matt to start his day. Heused to do okay because he had thesame bus driver and the same seat,the first one on the left near thedoor. This past year there havebeen five different bus drivers whocannot seem to allow him to havethe seat he needs to start his day. Idrive him, his sisters, and his bestfriend to school every day. It helpsus all start our day in a morepositive way.

Sue

When Bryce was in the first grade,the driver of the accessible busrefused to take him to hisgrandmother's house after schoolif I was working. She told Bryceand me one morning as he wasgetting on the bus, "I'm droppingyou off at home whether any oneis home or not."

Candice

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Life with Annie is full of hopes anddreams. I believe Annie can liveindependently and make out-standing contributions to society. Ibelieve she can be happy anddevelop satisfying personalrelationships.

Roberta

What is important to me is howAmanda's life will be. We need toask how we can make her lifebetter, help her be more produc-tive, and ensure that she is a fullyincluded member of her commu-nity. We need to look at theseissues from her perspective.

Dawn

If we start early, we save later. Byteaching my son when he is youngthe things that he needs to know tobecome part of the community,society will not have to provideextensive support when he isolder.

Stacie

I dream of one day having some-one in my life who understandsthe trials and tribulations of achild with special needs. En-visioning being alone for the next20 to 40 years is too depressing.

Tonya

Brett wants to be a fighter pilot ordesign Lego kits. He wants to go tohis dad's alma mater, MaineMaritime Academy. I know he canachieve these dreams. Will othersbe willing to help him along theway?

Nancy

I am very optimistic that Brandonwill reach his own personalpotential.

Tonya

We all look to the future with greathope. For those of us who havechildren, we dream of a futurewhere they are happy, loved, andsuccessful. The vision of the future for

parents of children with disabilities is filled

with thoughts of their children being part

of a loving, supportive community where

they are judged not on their disability, but

simply on their ability. They dream of their

children graduating with their non-

disabled peers, having jobs, being married,

having friends they can count on, and

living in their own home or apartment.

Only when we, as a community, embrace

everyone and as a nation provide them with

the needed supports, can these dreams

become a reality for families who have

children with disabilities. As a society, we

must recognize the value of each person

regardless of his or her level of ability. For

every dream there is a corresponding

nightmare. Everyone, individually and

collectively, has the power to help

individuals with disabilities and their

families to fulfill their dreams and to avoid

potential nightmares.


9

We all know the pain of not fittingin. We all hope that by somemiracle our children with andwithout disabilities will never facethat pain.

Dawn

My dreams for Matt's future arefor him to be doing the things heloves, to have friends, and tocontribute to society in meaningfulways. I'd love a cure for mentalillness when I think the sky is thelimit.

Sue

Isn't what we all want for ourchildren, the very, very best? Iknow I do. Who knows, Nina maybe the very first female president.

Diana

I often visualize Bryce at his highschool graduation. He has startedtalking about going to college. Ihave finally graduated with adegree in special education. I amlooking for a teaching job. Maybewe can have a somewhat normallife after all.

Candice

My dream is that Amanda will berespected and valued for herunique and individual gifts andtalents, not viewed through herdisability.

Dawn

Our dream is that both ourchildren are included in society,and neither is excluded orseparated. Everyone belongs to oneanother as a whole.

Stacie

Bef

ore

You

Dec

ide

Before you decide, we want you to know:What you can do:

Honor the commitment to fair andequitable treatment afforded people withdisabilities under key legislation (e.g., ADA,IDEA, Section 504, FERPA)

Know a parent(s) in your area who cangive feedback

Be respectful and polite

Provide parents in your area with copies oflegislation/policy in language that isunderstandable

Call the key parent organizations to obtaininformation on the potential impact ofdecisions

Believe that all families are valuableresources

Review your office protocol to ensure"family-friendly" interactions

Help connect parents with agencies,groups, and/or individuals who can offerthem support

Understand the impact that your decisionshave on individuals with disabilities

What we can do:

Explain the effects that proposedlegislation/policy can have on individualswith disabilities and their families

Share real life situations with policymakers who do not have the experienceliving with an individual with a disability

Be respectful and polite

Sit on committees, panels, task forces, orboards of directors

Testify

Give you feedback when your efforts aresuccessful

Care for ourselves and our families

Advocate for our children

Be a support to other parents who havechildren with disabilities

Have a cup of tea with you and talk


0

Linda Chamberlain isthe aunt of a child with adisability. Chris is herbeautiful, eleven year oldnephew who has autism.He lives with his motherand younger brother.Chris attends MemorialSchool in New Gloucester.He has enthusiasticallyparticipated in SpecialOlympics, where he lastyear was awarded gold,silver, and bronze medals.He enjoys being withfamily and especially looksforward to spending timewith his cousins. Chrisalso loves to visit his greataunt.

Chris

Esther Chesley ismostly at home with a fewhours working in a smallboarding home for seniorladies. Esther says, "I ammarried to a wonderfulman named Bruce, whocan do just aboutanything. We have aterrific boy, Grant, who is13 years old. He loves toread and enjoys sports.We are now the legalguardians of Travis, a 10year old boy with severaldifferent problems. He isan enjoyable child who isbright, generous, and fullof affection. We havespent the last yearadapting to each other asour family has changed."

Stacie Clement has beenmarried for 12 years to awonderful and courageousman, Charlie. He hasalways been there whentimes were difficult. Theyhave two terrific boys, Carl,

12 years old who is in the

seventh grade and Adam,who is 8 years old, has

autism, and is in the thirdgrade. Adam loves puzzles,listening to music, reading,art, and camping outdoorswith his brother and hisdad. He loves his family

very much and he has a lotof people who care abouthim. Stacie states, "Having a

child with a disability hastaught us to be more patientand more sensitive to

others. Everyday we plan tomove ahead."

4ft. MI 1 1111n

Travis Adam

Center for Community Inclusion: Maine's ugr,29 v t)

Dawn Cummings andher husband, Wayne, havebeen married for 7 yearsand live in Norway. Theyhave two beautiful girls,Amanda, 5, and Allison, 3.Amanda is legally blindand has developmentaldelays. Amanda lovesmusic, videos, playingwith her friends, andworking on the computer.In addition to being amother and wife, Dawnworks full time as amanager at an insurancecompany. Dawn is avolunteer advocate forchildren with specialneeds with MaineAdvocacy Services. Dawnis a board member for theDevelopmental DisabilitiesCouncil.

Amanda

Sue Henri-MacKenzielives in East Lebanon,

Maine with her threechildren, Cassandra 10,Matt 9, and Micheala 6;their cat, Funky; andrabbit, Raisin. All threechildren have specialstrengths and specialneeds. Sue has been activein many projects,organizations, andcommittees concerned withthe quality of life forpeople with disabilities andtheir families. Sue teachesAmerican Sign Language.

She is a member of theYork County Case Review,

and the Parent AdvisoryCouncil on Early

Intervention. She has justcompleted a handbook ontransition to kindergarten.

Matt

Martie Kendrick livesin Bar Mills, Maine withher husband, Brian, andtwo teenage sons, Asherand Zachary. Asher, whohas Asperger's syndrome,is anxiously approachinghis senior year in highschool and has justpurchased his first car."Our family worries thatwhen Asher leaves schoolsthere will not be thenecessary supportsavailable to propel himinto a satisfying adult life."Martie is also anEducational Specialist atthe Center for CommunityInclusion, Maine'sUniversity AffiliatedProgram. Martie co-instructed the FamilyLeadership Training.

Tonya Labbe is a singlemother of three children,Spencer, 2; Kirsten, 4; andBrandon, 6. Brandon hasbeen diagnosed withPervasive DevelopmentalDisorder and OppositionalDefiant Disorder. Helooks like any other fiveyear old. His boyish looksand charm tend to winover even his most fierceopponents. Tonya isconstantly advocating forBrandon and attends manyconferences and seminarsin order to further herown knowledge. Shefirmly believes thatBrandon and she aretrailblazers and pioneerswith the system.

Asher BrandonCenter for Community Inclusion: Maine's UAP

30

Janice MacDonald ismarried to a great guynamed Bill. They have twochildren. Sarah is 5 yearsold and is very outgoingand independent. Scott is avery active eight year oldwho has Bipolar Disorderand Attention Deficit/Hyperactivity Disorder,which are neuro-biologicaldisorders. Janice workedfor 12 years as a nurse inthe Recovery Room. Whenthings became too hecticfor Scott at school, shestopped working to provideScott the intensive adultsupervision he needs. Shebelongs to two supportgroups and an on-linesupport group. She sharesinformation, articles, andsupport to other parents.

IMWM _UMW

Scott

Diana McNally hasbeen married for19 years. She and herhusband, David, have fourgreat kids. Erica (18) is asenior at the Maine Schoolof Science and Math.David Jr. (16) is a juniorat Gray-New GloucesterHigh School. Nathan (12)is a sixth grader at Gray-New Gloucester MiddleSchool. Nina (6) is akindergartner with severeoral and verbal dyspraxiaand sensory issues. Dianasays, "As far as I'mconcerned, all children arespecial. It does not matterif they are gifted or havespecial needs. They allhave the right to be taughtto the best of theirabilities."

Nina

Nancy Niles has beenmarried for 14 years. Sheand her husband, Dan,have two wonderful,energetic, bright, creativeboys with AttentionDeficit/HyperactivityDisorder (ADHD). Like allchildren, Brett, 12 andKurt, 9, can both be asource of pleasure andaggravation. Nancy was ateacher for a number ofyears before going to workat the Maine ParentFederation teachingparents how to accessresources to meet theneeds of their children.Nancy recently moved outof state and plans tocontinue her advocacy onbehalf of families whohave children with ADHD.

Roberta Raymond'shighest commitment is toher family. Her husbandof 17 years, Jeff, is andalways has been a strongand loving companion.They have two wonderful,bright, and energeticchildren. Jake is 13 andAnnie is 7, with cerebralpalsy. Roberta feels that"If we allow our childrento be who they are andgive them our love andrespect, they will growstrong and free to reachfor their own dreams."Roberta has been a specialeducation and classroomteacher, is a graduate ofBoston University, and hasher Master's degree inSpecial Education from theUniversity of Maine atOrono.

Brett AnnieCenter for Community Inclusion: Maine's UAP

31 0(

Candice Russell lives inPlymouth, Maine with hertwo children Bryce, 11,and Emma, 7. Bryce hadNeuroblastoma when hewas an infant. A spinaltumor caused paralysis sohe wears leg braces. He isbright and extremelyenergetic. He is interestedin sports and plays on the"High Rollers," the firstwheelchair basketballteam in Maine. Emmaloves animals and is veryartistic. Candice enjoysmusic and dogsledding.She has a Bachelor'sdegree in Art Educationand a Master's degree inSpecial Education. She iscurrently tutoringchildren with chronicillness or disabilities intheir homes or hospital.

Bryce

Before you decide, let me tell you aboutmy family:

38

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